ECPC ANNUAL REPORT 2009

Nothing About UsWithout Us!

ECPC is speaking with a single voice for all cancer patients

Nothing About Us Without Us!

http://www.ecpc-online.org

ECPC – Speaking with a single voice for all cancer patients

Established in 2003, The European Cancer Patient Coalition is the voice of the European cancer patient community,uniquely representing the interests of all cancer patient groups from the major to the rarer cancers. It has been

established to represent the views of cancer patients in the European healthcare debate and to provide a forum forEuropean cancer patients to exchange information and share best practice experiences.

We derive our mandate to speak with "one voice" for all cancer patients from our membership and our democratic structure. With its motto "Nothing about us without us!", ECPC represents more than

300 patient organisations in 41 countries, including the 27 EU Member States.

ECPC’s Mission

� Making cancer a priority for action on the Europeanhealth policy agenda

� Effecting change in legislative or regulatory policiesto help optimise cancer prevention, detection, treat-ment and care throughout Europe.

� Ensuring that all cancer patients in the EU have access to timely and appropriate information aboutprevention, screening, early intervention, on-goingclinical trials and best quality treatment and care.

� Empowering cancer patients to take an active role inshaping European and national policy that impactson cancer prevention, treatment and care

� Ensuring that best cancer practice is shared acrossthe EU and gaps within and between MemberStates are eradicated

� The purpose of the association is to foster coopera-tion between the cancer patients’ organisationswithin Europe and to develop a common policy, and everything that is related to this in the broadestsense of the word, either directly or indirectly.

ECPC’s Objectives

� To ensure that the rights of cancer patients areupheld and enforced.

� To increase cancer patients’ representation and influence at the highest level of decision making,nationally and Europe-wide, in all areas that affecttheir health.

� To empower patients to become true partners in thehealthcare system.

� To obtain for patients certain and timely access to appropriate and accurate prevention, medical diagnosis, treatment and care, including psycho-social care.

� To encourage population-based screening programmesaccording to European quality guidelines.

� To promote the advance of cancer research, to include all applicable information on welldesignedClinical Trials and where possible the right to enrolin them.

� To call for improved multi-disciplinary training of health professionals.

ECPC Head Office, Am Rothenanger 1b, 85521 Riemerling, Germany, Tel.: + 49 89 62836807, Fax + 49 89 62836808, email: info@ecpc-online.org

http://www.ecpc-online.org

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Index

About ECPC ....................................................................................................................................................................... 3ECPC's Six Guiding Strategic Goals ............................................................................................................................ 3ECPC’s Objectives ............................................................................................................................................................. 3ECPC's Priority Areas (2009-2013) ............................................................................................................................ 3ECPC Board of Directors (2007 – 2010) .................................................................................................................. 4ECPC Staff .......................................................................................................................................................................... 4ECPC Patrons ..................................................................................................................................................................... 5ECPC Members ................................................................................................................................................................. 5ECPC’s EU Health Policy Work ..................................................................................................................................... 9

European Partnership for Action Against Cancer .............................................................................................. 9Clinical Trials .................................................................................................................................................................. 9Health Policy Forum (DG Sanco) .......................................................................................................................... 10Rare Diseases Task Force (DG Sanco) .................................................................................................................. 10Pharmacy Services (DG Internal Market)............................................................................................................. 10European Medicines Agency - Patient and Consumer Working Party ...................................................... 10EU Project: European Guidelines for Quality Assurance of Colorectal Cancer Screening ................. 10EU Project: RARECARE ............................................................................................................................................. 10MEPs Against Cancer (MAC) .................................................................................................................................. 11EU Parliament Elections 2009................................................................................................................................ 11European Forum for Good Clinical Practice (EFGCP) ..................................................................................... 11European Platform for Patients' Organisations, Sciency and Industry (EPPOSI) ................................... 11EFPIA Think Tank ........................................................................................................................................................ 12ECCO Patient Advisory Committee ...................................................................................................................... 12European Patients Right Day 2009 .................................................................................................................... 12“European Action Against Rare Cancers" Campaign ..................................................................................... 12Other ECPC Policy Activities in 2009 ................................................................................................................... 12

ECPC’s Capacity Building work for ECPC Members ........................................................................................... 13ECPC Advocacy Toolbox ........................................................................................................................................... 13ECPC Masterclass: Members in Action 2009 ................................................................................................... 13

ECPC Member Updates and Press Releases ......................................................................................................... 14ECPC Presentations at Conferences in 2009 ....................................................................................................... 14Collaboration ................................................................................................................................................................... 15Outlook on ECPC’s activities in 2010 ..................................................................................................................... 15Finances ............................................................................................................................................................................ 16

Funding Policy ............................................................................................................................................................. 16Funding 2009 ............................................................................................................................................................. 16ECPC Accounts 2009 ............................................................................................................................................... 17

ECPC Cancer Manifesto ............................................................................................................................................... 18How to contact ECPC ................................................................................................................................................... 19

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Established in 2003, TheEuropean Cancer Patient

Coalition (ECPC) is the voice of the European cancerpatient community, uniquely representing the interests ofall cancer patient groups from the major to the rarercancers. It has been established to represent the views ofcancer patients in the European healthcare debate and toprovide a forum for European cancer patients to sharebest practice on patient advocacy.

We derive our mandate to speak with "one voice" for allcancer patients from our membership and our democraticstructure. With its motto "Nothing about us without us!",ECPC represents more than 300 patient organisations in41 countries, including all 27 EU member states.

About ECPC

• Making cancer a priority for action on the Europeanhealth policy agenda

• Effecting change in legislative or regulatory policies tohelp optimise cancer prevention, detection, treatmentand care throughout Europe

• Ensuring that all cancer patients in the EU have accessto timely and appropriate information aboutprevention, screening, early intervention, on-goingclinical trials and best quality treatment and care

• Ensuring that best cancer practice is shared across theEU and gaps within and between Member States areeradicated

• Empowering cancer patients to take an active role inshaping European and national policy that impacts oncancer prevention, treatment and care

• Fostering co-operation between the cancer patients’organisations within Europe and to develop a commonpolicy

ECPC's Six Guiding Strategic Goals

• To ensure that the rights of cancer patients are upheldand enforced

• To increase cancer patients’ representation andinfluence at the highest level of decision making,nationally and Europe-wide, in all areas that affect theirhealth

• To empower patients to become true partners in thehealthcare system

• To obtain for patients certain and timely access toappropriate and accurate prevention, medical diagnosis,treatment and care, including psycho-social care

• To encourage population-based screening programmesaccording to European quality guidelines

• To promote the advance of cancer research, to includeall applicable information on well-designed clinicaltrials and where possible the right to enroll in them

• To call for improved multi-disciplinary training of healthprofessionals

ECPC’s Objectives

• Influence EU policy that has an impact on theprevention, detection and treatment of cancer

• Reach out to national level to support ECPC membersin their capacity building efforts on the national level

• Build strategic partnerships with key cancerstakeholders to create mutual benefit

• Build ECPC's capacity through an effective and growingorganisation

ECPC's Priority Areas (2009-2013)

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ECPC was founded by a group of cancer patients with the encouragement of healthcare professionals. It is governed by aBoard of Directors, over half of whom are cancer patients or survivors from six European Union countries. These membersform the board for the period 2007 – 2010:

ECPC Board of Directors (2007 – 2010)

� Tom Hudson (ECPC President), Europa Uomo, Ireland� Simona Ene (ECPC Vice President), Sharing same

Destinies, Romania� Heide Preuss (ECPC Vice President), mamazone woman

and research against breast cancer, Germany� Sandy Craine (ECPC Secretary), CML Support Group, UK

� Tom van der Wal (ECPC Treasurer), Stichting DiagnoseKanker (SDK), The Netherlands

� Lynn Faulds Wood, Lynn’s Bowel Cancer Campaign, UK � Luminita Andreescu, FAVO & Anvolt, Italy� Evgeniya Adarska, APOZ, Bulgaria� Jesme Fox, Roy Castle Lung Cancer Foundation, UK

(resigned June 2009)

ECPC Staff

� Jan Geissler, ECPC Director� Denis Horgan, ECPC Political Affairs Manager

� Hildrun Sundseth, ECPC Director EU Policy (resignedJune 2009)

� Michaela Geissler, ECPC Secretariat

Tom Hudson Simona Ene Heide Preuss Sandy Craine

Lynn Faulds Wood Luminita Andreescu Evgeniya Adarska Jesme Fox

Jan Geissler Denis Horgan Hildrun Sundseth Michaela Geissler

Tom van der Wal

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Androulla Vassiliou Jolanta Kwasnieska Els Borst-Eilers

ECPC is grateful for the patronage of

� Androulla Vassiliou (Cyprus)EU Health Commissioner (2008-2010)Former First Lady of CyprusHonorary President of the Cyprus Association of CancerPatients and Friends

� Jolanta KwasnieskaFounder and President of the "Communication Without Barriers" FoundationFormer First Lady of Poland

� Els Borst-Eilers (The Netherlands)Former Minister of Health of the NetherlandsMedical Doctor and Chair of the Dutch Federation ofCancer Patients

ECPC Patrons

ECPC welcomes all European Cancer PatientOrganisations as members of ECPC. Over 300 cancerpatient organisations from 41 countries have alreadyjoined ECPC as Full Members or Associate Members. The membership of the European Cancer Patient Coalition(ECPC) shall consist of cancer patient organisations. Fullmembership of ECPC is open to organisations meeting thefollowing criteria:

• The organisation shall be registered as a non-profitorganisation in one of the EU Member States. If theapplicant organisation is not registered in an EUMember State, additional information will need to beprovided demonstrating European focus and activities.

• The main objective of the organisation must be theadvocacy, support and care of cancer patients and theircarers, and have a clear patient focus.

• Cancer patients or their relatives shall be involved inthe organisation's governing body and committees

• The organisation shall be willing to co-operate withother organisations having the same objectives.

• The organisation shall be independent of governments,political parties and commercial organisations.

• The organisation shall accept and abide by theStatutes/Constitution, Vision, Mission and Objectives,as published on the ECPC website.

Other organisations, which do not fulfil the requirementsof above are welcome to join ECPC as Associate Member,as long as they are a cancer-related organization, are non-profit, have the advocacy, support and care of cancerpatients and their carers as their key focus, and showinvolvement of cancer patients or their relatives in theorganisation's governing body and committees.

If you represent an EU cancer patient organisation, wehope you will join us in the fight against cancer. To become an ECPC member please contact info@ecpc-online.org or see the ECPC website for theapplication form.

ECPC Members

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Selbsthilfe Prostatakrebs AustriaMyeloma and Lymphoma Aid Austria AustriaAustrian Myeloma Patient Association/EMP AustriaAssociation Cancer House/Verein Krebshaus AustriaUs Too (Belgium) BelgiumEuropean Myeloma Platform (EMP) BelgiumStudy Group Brain Tumours Belgium/Werkgroep Hersentumoren VZW BelgiumContactgroup Myeloma Patients BelgiumOntmoeting Ontspanning Kanker BelgiumAPOZ- National Association of Patients with Oncological Diseases BulgariaNational Association of People suffering from CML, Bulgaria BulgariaBulgarian Women's Cancer Association BulgariaNational Organisation For Cervical Cancer Prophylaxis BulgariaCyprus Association of Cancer Patients and Friends CyprusPatients' Rights Movement of Cyprus (KIDDA) CyprusCyprus Anti-Cancer Society CyprusLeague Against Cancer Prague Czech RepublicARCUS Czech RepublicDiagnoza CML Czech RepublicEuropa Uomo Brno (Czech Republic) Czech RepublicEuropa Uomo Denmark (PROPA PROstatacancer PAtientforeningen) DenmarkDanish Breast Cancer Organisation DenmarkPatient Group for lymph and leukemia cancer patients DenmarkUnion of Estonian Leukaemia Patients EstoniaEstonian Cancer Society EstoniaFinnish Prostate Cancer Association (PROPO) FinlandANAMACAP (association Nationale de Malades du Cancer de la Prostate) FranceFrench GIST Patient Association/Ass Francais des patients du GIST FranceMyeloma Euronet AISBL GermanyMamazone, women and research against breast cancer GermanyLeukaemie-Online e.V. GermanyBundesverband ProstataKrebs Selbsthilfe (BPS) e.V. GermanyPATH GermanyGerman Fatigue Society / Deutsche Fatigue Gesellschaft e.V. GermanyGerman Leukaemia and Lymphoma Aid / Deutsche Leukaemie- und Lymphom-Hilfe GermanyThe House of Life/Das Lebenshaus GermanySPAEN (Sarcoma Patients EuroNet) GermanyCancer Patients Society of Macedonia-Thrace GreeceSociety of Cancer Patients in Katerini/Pieriz GreecePan-Hellenic Association of Laryngectomees GreeceCancer Patient Society of Nigrita GreeceSociety of Volunteers Against Cancer GreeceSociety Of Cancer Patients In Veria GreeceAssociation Of Cancer KEFI Athens GreeceNon-Profit Organization Friends of Cancer "BE STRONG" GreeceHungarian League Against Cancer HungaryChildrens Cancer Foundation HungaryCML and GIST Patient Advocacy HungaryEuropa Uomo Ireland IrelandLymphoma Support Ireland IrelandMen Against Cancer (MAC) IrelandAssociazione Italiana Laringectomizzati AIL ItalyAssociazione Italiana Contro le Leucemie (AIL) Italy

Associazione Italiana Malati di Cancro, parenti ed amici (AIMaC) ItalyStudio e Assistenza Neoplasie del Sangue (SANES) ItalyAssociazione Italiana Stomizzati-Finco (AISTOM) ItalyAssociation 'Pina Simone per la tutela dell' ammalato di cancro' ItalyAssociazione Vela ItalyItalian Federation of Volunteer-based cancer organisations(FAVO) ItalyAssociazione Nazionale Guariti O Lungoviventi Oncologici ItalyAssociazione Lotta Tumori Nell'eta' Giovanile (ALTEG) ItalyAssociazione Nazionale Donne Operate al Seno (ANDOS) ItalyLe Donne Scelgono ItalyAssistenza Neoplastici A Domicilio Alessandra Fusci (ANDAF) ItalyAssociazione Don Franco Baroni ItalyAssociazione per L'Assistenza Morale e Sociale Negli Istituti onlus (AMSO) ItalyAssociazione Nazionale Assistenza Psicologica Ammalati di Cancro (ANAPACA) ItalyAssociazione Linfa Contro il Cancro ItalyMoby Dick- Associazione per le Unita di Cura Continuativa Onlus ItalyAssociazione Italiana Oncologia Apparato Digerente (AIOAD) ItalyAssociazione di Volontariato per Malati Oncologici (ANTHOS) ItalyFederazione Italiana Incontinenti (FINCO) ItalyInsieme per la Salute ItalyPer Te Donna Onlus ItalyAssociazione Nazionale Donne operate al Seno-Rovigo (ANDOS) ItalyAssociazione Malati Oncologici (AMO) ItalyAssociazione Oncologica Pisana P. Trivella ItalyCoordinamento La Mela Blu ItalyAssociazione CuLCaSG - ALCASE Italia ONLUS ItalyProgetto Vita 'Perche' Di Cancro si Puo Vivere ItalyNoi e il Cancro- Volonta di Vivere ItalyComitato Andrea Tudisco Onlus ItalyGruppo Assistenza Neoplastici (GNA) ItalyFondazione Teresa e Luigi Beaumont Bonelli per le Ricerca sul cancro ItalyAssociazione 'Lotta Contro I Tumori Renzo e Pia Fiorot' ItalyAssociazione IO Domani ItalyAssociazione Siciliana per La Lotta Contro le Leucemie e I Tumo ItalyAssociazione Scientifica per la Terapia e la Ricerca in oncologi (ASTRO) ItalyAssociazione 'Insieme' ItalyAiutiamoci a Vivere Onlus ItalyArmonia- Associazione per la lotta contro I tumori al seno ItalyAssociazione Stare Bene Insieme ONLUS ItalyAssociazione in Famiglia ItalyCentro Ascolto Operate al Seno onlus (C.A.O.S) ItalyAssociazione Allegra ItalyAssociazione Guida Onlus ItalyFondo Edo Tempia Onlus ItalyAssociazione V.I.O.L.A ItalyAssociazione Umbra per la lotta contro il cancro (AUCC) ItalyQualita Della Vita in Oncologia (Quavio) ItalyAssociazione per il sostegno oncologico ItalyAssociazione 'Mani Tese Ogliastra' ItalyAssociazione Donne Operate al Seno (BIOS) ItalyAssociazione Nazionale Volontari Lotta contro I Tumori (ANVOLT) ItalyWomen Against Lung Cancer in Europe ItalyAssociation of Support for Leukaemia Patients LatviaLatvian Support Society for Oncology Patients "Dzivibas koks" LatviaSociety of Oncohematological Patients 'Kraujas' (OHLB) Lithuania

Full Members as of 31.12.2009 http://ecpc-online.org/members

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Pink Ribbon Society LithuaniaLithuanian Association of Prostate Cancer Patients LithuaniaALMA LithuaniaRare Cancer Patients Association LithuaniaA Heart for Sick Children LuxembourgBreast Care Support Group MaltaBorstkanker Vereniging Nederland (Dutch Breast Cancer Society) NetherlandsLongkanker Informatiencentrum/Lung Cancer Information Centre NetherlandsFoundation Contact- Group Leukaemia/NFK NetherlandsContact Group Stem Cell Transplantation NetherlandsCKP - MM and WM Patient Association NetherlandsAsbestslachtoffers Vereniging Nederland (Avn) NetherlandsBelangenvereniging Von Hippel Lindau (Vhl) NetherlandsBelangengroep M.E.N NetherlandsPolyposis contactgroep (PPC) NetherlandsVereniging HNPCC NetherlandsStichting OLIJF NetherlandsVereniging Cerebraal NetherlandsStichting Klankbord NetherlandsStichting Melanoom NetherlandsStichting Jongeren en Kanker (SJK) NetherlandsVereniging Ouders, Kinderen en Kanker' (VOKK) NetherlandsStichting Longkanker NetherlandsStichting Contactgroep Prostaatkanker (Scp) NetherlandsNederlandse Stomavereniging 'Harry Bacon' NetherlandsNederlandse Stichting Voor Gelaryngectomeerden (Nsvg) NetherlandsVereniging Waterloop NetherlandsStichting Kernzaak NetherlandsNFK NetherlandsHodgkin Contactgroup NetherlandsStichting Diagnose Kanker/SDK NetherlandsSupport Immigrants And Cancer NetherlandsEuropean Waldenstrom Macroglobulinemia Network NetherlandsAmazons (Warsaw) PolandAmazons (Poznan) PolandAssociation of Men with Prostate Diseases 'Gladiator' PolandNational Association for CML Patients Aid PolandPolish Association of Ostomy Care, POL-ILKO PolandStowarzyszenie Pomocy Chorym Na Gist PolandSarcoma Patients Association PolandBlood Cell Foundation for children with cancer diseases PolandFundacja Polska Koalicja Organizacji Pacjentow Onkologicznych PolandViva Mulher Viva Association PortugalAPLL Associacao Portuguesa de Leucemias e Linfomas PortugalAssociacao Portuguesa dos Doentes da Prostata (APDP) PortugalRomanian Cancer Society RomaniaP.A.V.E.L. Association RomaniaRomanian Cancer Association - "Common Destinies" Group RomaniaAssociation of Cancer Patients from Romania (A.B.C) RomaniaRomanian Leukaemia Association RomaniaMyeloma Euronet, Romania Romania"Club of Bistrita Amazons"Association RomaniaAsociatia Oncologic Rom RomaniaEuropa Uomo Slovakia SlovakiaCancer Patients Association of Slovenia SloveniaSlovenian Breast Cancer Coalition SloveniaFEFOC Spain

Spanish Association of Lymphoma Sufferers SpainGrup Agata SpainFECMA SpainProstatacancerförbundet (PCF) SwedenGynsam SwedenSwedish Lung Cancer Support SwedenBreakthrough Breast Cancer United KingdomMacMillan/Cancerbackup United KingdomLeukaemia Care Society United KingdomLymphoma Association HQ United KingdomChristian Lewis Trust - Cancer Care for Children United KingdomInternational Myeloma Foundation (UK) United KingdomB.E. Bosom Friends United KingdomCancer Link Aberdeen and North (CLAN) United KingdomGist Support UK United KingdomBradford Cancer Support United KingdomSamantha Dickson Research Trust United KingdomSarcoma UK United KingdomNational Conference of Cancer Self Help Groups United KingdomChildhood Eye Cancer Trust : CHECT United KingdomRiding's Asbestos Support and Awareness Group United KingdomTak Tent Cancer Support Scotland United KingdomKeith Cancer Link Support Group United KingdomRadiotherapy Action Group Exposure (RAGE South) United KingdomOvacome United KingdomRoy Castle Lung Cancer Foundation Glasgow United KingdomMulberry Centre United KingdomManx Cancer Help Association United KingdomUlster Cancer Foundation (UCF) United KingdomLet’s Face It United KingdomComplementary Cancer Care Trust United KingdomDurham and District Womens Cancer Support Group United KingdomDoncaster Cancer Support Group United KingdomCavendish Centre for Cancer Care United KingdomCancer Information and Support Services (CISS) United KingdomGKT Cancercentre User Liaison Group United KingdomCML Support Group UK United KingdomGynae C United KingdomPCaSO (Prostate Cancer Network) United KingdomCancer Equality United KingdomLynn's Bowel Cancer Campaign (LBCC) United KingdomAMEND Association for Multiple Endocrine Neoplasia Disorders United KingdomAMEND 1 (Association for Multiple Endocrine Neoplsia Disorders) United KingdomBrain Tumour UK United KingdomEast Lancs Integrated Health Care Centre United KingdomConsumer Liaison Group of the National Cancer Research Institute United KingdomProstate Cancer Support Association (Central England) United KingdomNational Association of Laryngectomee Clubs United KingdomPatient Cancer Support Federation/Europa Uomo United KingdomBowel Cancer Wales (BCW) United KingdomMyelodysplastic Syndromes Foundation (MDSF) United KingdomRarer Cancers Forum United KingdomIBTA (International Brain Tumour Alliance) United KingdomBrainstrust: The Meg Jones Brain Cancer Charity United KingdomMelanoma Action & Support Scotland (MASScot) United Kingdom

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Patients Rights Protection Center ArmeniaBreast Cancer Network Australia AustraliaCancer Voices NSW Australia AustraliaHumanitarian Association Of Prjateljice 'Girlfriends' Bosnia and HerzegovinaLIFE/Zenica Bosnia and HerzegovinaAssociation Of Stoma Patients ILCO Of Republic Of Srpska Bosnia and HerzegovinaAssociation for those affected by acromegaly and pituitary disease Bosnia and HerzegovinaABRALE BrazilBulgarian Association for Patient's Defence BulgariaWillow Breast Cancer Support and Resource Services CanadaHULL Croatian Leukemia and Lymphoma Society CroatiaInvalid Society ILCO Karlovac CroatiaInvalid Society Ilco/Stoma Klub Nova Gradiska CroatiaCroatian Disabled Societies ILCO Association Croatia"FOR A NEW DAY" CroatiaHelp those with Cancer/KHYD CyprusFriends For Life CyprusFaculty Of Medicine Czech RepublicIndependent Patient Group DenmarkESCSG Basel FranceMyelom - Plasmozytom Hilfe Muenchen GermanyLaugh and Walk (LAW) GermanySelbsthilfegruppe fur Patientinnen mit Tumoren der Genitalien GermanySelbsthilfegruppe Plasmozytom/Multiple Myeloma - Berlin GermanyPlasmozytom/Multiple Myelom Selbsthilfegruppe In Der Pfalz GermanyThe Ormylia Foundation, Center for Disease Prevention, “Panagia Philanthropini” GreeceIrish Cancer Society IrelandIsraeli CML Patients Support IsraelIsrael Cancer Association IsraelPROST ItalyAssociazione House Hospital Onlus ItalyAssociazione Maria Bianchi ItalyANTEA Associazione - Onlus ItalyCancer Patient Advocacy Bureau LatviaMyeloma Patients Organisation LatviaCancerVoices New Zealand New ZealandEsperantra PeruFoundation for Support of People with Urology Cancer PolandStowarzyszenie Pomocy Chorym na Szpiczaka Poland

The Fulfilled Dreams Fund/Fundacja Spelnionych Marzen PolandTriedinstvo Russian FederationAssociation ILCO Serbia Serbia and MontenegroISKRA Serbia and MontenegroAssociation of Myeloma Patients in Serbia Serbia and MontenegroSlovak League against Cancer/Venus Club SlovakiaMyeloma Euronet, Slovakia SlovakiaSlovenian Union for Health promotion and health education SloveniaMieloma.Com SpainBlodcancerfoerbundet (Blood Cancer Foundation) SwedenFoundation for the Promotion of Bone Marrow Transplantation Switzerland SwitzerlandTaichung Kai-Huai TaiwanTurkey Oncology Patients Friendly Society TurkeyTrabzon Hope and Welfare Organisation TurkeyYouth Accumulation Association TurkeyPioneering Association of Stem Cell Transplantations TurkeySakarya Leukemia and cancer patients health and education association TurkeyFANCONI ANEMIA ASSOCIATION TurkeySkinship United KingdomAfrican Caribbean Leukaemia Trust (ACLT) United KingdomMustard Tree MacMillan Centre United KingdomMacMillan Butterfly Centre United KingdomArdgowan Hospice United KingdomSolihull Cancer Support Group United KingdomWirral Holistic Care Services United KingdomUK Children's Cancer Study Group Hearts of Oak United KingdomAbacus Cancer Self Help and Support Group United KingdomHospice of St Mary of Furness United KingdomCastleside Group United KingdomCornwall Cancer Help Groups (Truro) United KingdomBritish Thyroid Foundation United KingdomBritish Lung Foundation United KingdomCancerCare United KingdomPatients Association United KingdomVulva Awareness Campaign Organisation United KingdomMyeloma UK - Yorkshire Support Group United KingdomMyeloma People Network (Scotland) United KingdomCancer Partnership Research Group (SWSH Cancer Network) United KingdomLife Raft Group United StatesKidney Cancer Association United States

Associate Member as of 31.12.2009 http://ecpc-online.org/members

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One of ECPC's key priorities is to make cancer a priority foraction on the European health policy agenda. With itspolicy activities, ECPC aims to effect change in legislativeor regulatory policies to help optimise cancer prevention,detection, treatment and care throughout Europe. Thepolicies also need to ensure that gaps within and betweenMember States are identified and eradicated, and thatbest practice is shared.

By speaking with a united voice for all cancer patients,with cancer affecting one third of the EU population,ECPC managed to give a new impetus to tackling cancermore forcefully and collaboratively by the EU and its 27Member States. Combined efforts between patient groups,members of the European Parliament, the Commission,the European Medical Agency, EU Member States,industry and the oncology community made the fightagainst cancer once again a political priority for action.

Through our Brussels office, ECPC will continueinfluencing the European health policy agenda byworking closely with e.g. the Members of the EuropeanParliament, the EU Commission (DG Sanco, DG Research,DG Internal Market, DG Enterprise), the Health PolicyForum (HPF), the European Medicines Agency and the EUCommittee of Experts on Rare Diseases.

In 2009, ECPC has worked with all stakeholders to makecancer a political priority: for example, in the "EuropeanPartnership on Action against Cancer", with the "MEPsAgainst Cancer", in the European Parliament Elections,the European Medical Agency "Patient & ConsumerWorking Party", the European Health Policy Forum, theRare Disease Task Force, or EU research projects like"European Guidelines for Colorectal Cancer Screening" or"RARECARE".

European Partnership for Action Against Cancer

The "European Partnership for Action Against Cancer" wasinitiated by the EU Commission in September 2009 withthe support of a number of stakeholders like ECPC,bringing together the Commission, Member States andtheir Ministries of Health, patient organisations, healthprofessionals, researchers, industry and civil society. ThePartnership aims to engage relevant stakeholders acrossthe EU in a collective effort to tackle cancer by providinga framework for identifying and sharing information,capacity and expertise in cancer prevention and control.The long-term aim set out by the Commission is to reducenew cancer cases by 15% by 2020.

ECPC played a very active role in the Cancer Partnershipwhen it was initiated in 2009. At the launch event, LynnFaulds Wood facilitated the panel discussion titled 'The WayForward', constituted by experts and politicians. Mr. AlojzPeterle, co-chair of MEPs Against Cancer (MAC), gave theexample of ECPC efforts and the MAC initiative as evidence

of a partnership in action at the EU level. ECPC presentedstories of cancer survivors from the ECPC Membershipfrom all 27 EU Member States, also including ECPC'sBoard Members Heide Preuß and Tom van der Wal. Thepatient was at the centre of the Partnership's launch.

ECPC’s aim in the Partnership is to contribute the patients'voice and to include ECPC's member organisations in thework. ECPC proposed two key activities which werewelcomed: The "Virtual Partnership" as an internetcollaboration platform that will enable all partners tocollaborate via the Internet, and encourage the public tocontribute ideas. In addition, ECPC with the EuropeanCancer League has suggested an initiative "YoungEuropeans in the Partnership" to acknowledge theimportant role of young people and engage with youth-driven energy and unfettered inspiration using "SocialMedia". First projects within the Partnership are expectedto start their work in 2010.

http://ecpc-online.org/partnership

Clinical Trials

After consulting its membership, having meetings withthe Commission and clinicians, and an alignment withother patient groups, ECPC submitted a response to theEU Commission's “Impact Assessment of the Clinical TrialsDirective”. ECPC highlighted that clinical trials have beena key factor in improving cancer survival andadvancement in treatment. However, the Directive andtheir national implementations have slowed the openingof trials, without a large improvement in patient safety,which already had a good track record in trials inoncology, or a desired acceleration or harmonization ofpan-European cancer research. ECPC's detailed response isavailable on ECPC's website.

ECPC has also presented the patient perspective onclinical trials at various conferences, e.g. • "Access to follow-on treatment" (EPPOSI Workshop on

Clinical Trials, April 2009) • "Cancer patient perspective on patient protection in

centralized clinical trials applications and ethicsreviews" (EFGCP, July 2009)

• "Access to Clinical Trials (ECCO, Sept 2009)• "Therapy compliance, and patient perspective on collabo-

rative, translational cancer research" (DG Sanco, Sept 2009)• "Clinical research, therapy development and regulatory

considerations" (EPPOSI, Oct 2009)• "Understandability of informed consent and

information in clinical trials" (AIO, Nov 2009)http://ecpc-online.org/trials

ECPC’s EU Health Policy Work

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Health Policy Forum (DG Sanco)

ECPC is a member of the Commission's Health PolicyForum that brings together about 40 key stakeholders withan interest in health policy. The HPF provides a platform forpolicy formulation and consensus building around the EUhealth strategy. It also aims to ensure that the Commis--

sion’s health strategy is made clear to the public. It offersECPC the opportunity to influence and contribute at anearly stage to health policy development, setting ofpriorities and actions. In 2009, ECPC has supported theHealth Policy Forum e.g. with input on a common responseof the Health Policy Forum on the Commission'sconsultation on the future EU 2020 strategy.

Rare Diseases Task Force (DG Sanco)

The aims of the Rare Diseases Task Force are to advise andassist DG Sanco in promoting optimal prevention, diagnosisand treatment of rare diseases in Europe, in recognition of

the unique added value to be gained through Europeancoordination. Being an observer of the Task Force, ECPCprovided input into the discussions on behalf of rare cancerpatients.

Pharmacy Services (DG Internal Market)

In 2009, ECPC has developed new contacts with EUDirectorate General "Internal Market" which is responsiblee.g. for pharmacy services in the EU. Discussions werebased around the risks of online sales in terms ofcounterfeit medicine, the need of self-payers for competitive

pricing of over-the-counter medicines, home delivery, andthe potential role of pharmacies tackling adherence issuesin oral cancer therapies. In 2009, ECPC presented at theCommission's "Workshop on Access to High QualityPharmacy Services" which was attended by both theCommission and Member State representatives, outliningthe patients' interests in pharmaceutical care.

European Medicines Agency - Patient and Consumer Working Party

ECPC sits on the official Patient and Consumer WorkingParty (PCWP) of the European Medicines Agency. ThePCWP provides a permanent forum for interaction withpatients and consumer organizations to ensure that there ison ongoing dialogue between the Agency and the endusers of medicines. Specifically, ECPC ensures that thecancer the patient's voice regarded by the regulator. In its

PCWP work, ECPC is consulted about the user-friendlinessof product information for the public (EPARS) and packageleaflets (SPCs), and is involved in the preparation ofguidelines and consulted by Agency’s scientific committees,working parties, and scientific advisory groups.

ECPC participates in two PCWP working groups: "PatientInformation" and "Pharmco-vigilance and RiskManagement". More information at http://ecpc-online.org/ema

EU Project: European Guidelines for Quality Assurance of Colorectal Cancer Screening

ECPC is an associate partner in the Commission-fundedconsortium set up to produce quality cancer screeningguidelines for colorectal cancer. ECPC’s role is to make surethat the Guidelines will be patient-friendly and to create

public awareness of the need for screening. ECPC,represented by Lynn Faulds Wood, has strongly supportedthe dissemination of the project's activities, and hasassisted in the launch of colon cancer screeningprogrammes e.g. in Cyprus and Slovenia. ECPC also sits onthe steering committee of the project.

EU Project: RARECARE

The burden of rare cancers in Europe is unknown, and nogenerally accepted definition exists. There are largevariations in clinical outcome for rare cancers, with poorersurvival among older patients and in eastern Europeancountries. By aligning the epidemiological data of morethan 80 cancer registries across Europe, the EU-fundedproject "RARECARE – Surveillance of Rare Cancers inEurope" aims to provide an operational definition of "rarecancers", and a list of cancers that meet this definition, andto estimate the burden of rare cancers in Europe. It haspublished a list of rare cancers with data on incidence,

survival, prevalence and mortality. It will develop strategiesand mechanisms for the exchange of information amongall the key players involved in Europe-wide surveillance forrare cancers.

ECPC, as a project partner and member of the SteeringCommittee, provides the patient per-spective and supportsthe communication to a wider public. There have beenseveral meetings in 2009 where ECPC has presented thepatients' perspective, and has provided feedback on theprojects' deliverables.

http://www.rarecare.eu

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MEPs Against Cancer (MAC)

After the Europe against Cancer programme closed in2002, cancer had not been high on the political agenda ofthe European Union. This is why as a first step, ECPCencouraged Members of the European Parliament to set upan informal all-party forum called MAC – MEPs AgainstCancer. ECPC provided the MAC Secretariat since MAC’sinitial start in 2006. Until the 2009 elections of theEuropean Parliament, the group had grown to 70 MEPsfrom across the major political groups and Member States.MAC members were committed to make the fight againstcancer once again an EU priority. As a work basis, MAC hadadopted a "MAC Statement" with 7 policy recommen-dations which had been sent to Ministers of Health.

Since its initiation in 2006, MAC held 7 meetings todiscuss important cancer issues that need urgent attention,e.g. on cancer screening, cancer control strategies, nationalcancer plans or young people and cancer prevention. ECPCas the MAC Secretariat facilitated these meetings.

In summer 2009, with the end ofthe 5 year legislature of theEuropean Parliament, ECPC en-couraged its membership to sendletters to their MEPs requestingthem to support the battle againstcancer in their election campaigns,and to join MAC after elections. ECPC then alsocampaigned to transform MAC into a more formal group ofthe European Parliament. Even though the transformationdid not happen, the campaign was very successful withover 120 MEPs supporting this issue. ECPC continues tosupport MAC and their co-chairs.

The MAC Statement, meeting reports and press releasescan be found on the website www.mepsagainstcancer.org.The website was developed and maintained by ECPC tokeep MEPs in touch with the concerns of cancer patientsand citizens.

EU Parliament Elections 2009

Elections for Members of the European Parliament (MEPs)took place across Europe from 4-7 June 2009. ECPCprovided a toolbox to its ECPC member organisations toprepare their campaign. The toolbox contained the "ECPCGuide to the 2009 European Parliament elections",

template letters and the "ECPC Manifesto against Cancer",a draft press release and a newsflash to translate andpersonalize in national campaigns. In addition, ECPC sentletters to all MEPs, highlighting the concerns of cancerpatients, and asking them to support the fight againstcancer in their future work.

European Forum for Good Clinical Practice(EFGCP)

The European Forum for Good Clinical Practice (EFGCP) is aleading European non-profit think tank for discussion,research, and critical evaluation in the development ofEuropean health re-search. Its purpose is to promote GoodClinical Practice (GCP) and encourage the practice ofcommon, high-quality standards in all stages of clinical

research throughout Europe. EFGCP organises internationalconferences on these topics.

In July 2009, ECPC presented the cancer patientperspective at the "Multidisciplinary Workshop on A SingleCTA in Multinational Clinical Trials - Dream or Option?".Looking at the complicated field of ethics reviews, ECPCsupported the idea of centralized trial applications andethical reviews of clinical trials across Europe and called forless diversity in ethical reviews.

European Platform for Patients' Organisations,Sciency and Industry (EPPOSI)

EPPOSI is an EU patient-led partnership between patients'organisations, science and industry, founded in 1994 forthe exchange of information and discussion of policies inEU human healthcare. It aims to establish a strongEuropean alliance of these stakeholders, jointly working onhealthcare policies towards treatment and prevention ofserious diseases.

In 2009, ECPC has been on the Steering Committee andOrganizing committee of the "EPPOSI 10th Workshop onPartnering for Rare Diseases Therapy Development", andhas been presenting a cancer patient's voice at theconference. In addition, ECPC has co-chaired a session atthe "Workshop on Clinical Trials - Shaping the Future ofEuropean Clinical Research Legislation".

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EFPIA Think Tank

In 1998, patients’ organisations and the pharmaceuticalindustry decided to set up a joint Think Tank in order tohave a dialogue on EU policy issues in the area of healthand research. Patients’ organisations and industryrecognised that on many EU policies, patients andindustry may work together towards achieving the samepolicy goals, without compromising the others autonomy.

Patients’ organisations bring their own unique knowledgeon the challenges of living with their particular illnesses,their attitudes, perceptions and expectations.

ECPC is a member of this Think Tank which includes 28patient groups and 14 companies across all disease areas,and has participated in their meetings in 2009,contributing the perspective and special needs of thecancer patient community.

ECCO Patient Advisory Committee

ECPC is a member of the ECCO Patient AdvisoryCommittee, an independent initiative of ECCO (EuropeanCanCer Organisation). The committee's main function is to

provide the patients’ perspective and advice to ECCO'sactivities. With that activity, ECPC has provided input to theorganisers of the patient track of ECCO's annual congresswhich was held in September 2009 in Berlin, Germany.

Other ECPC Policy Activities in 2009

• Animal Welfare Directive – ECPC Response• Patients' rights in cross-border healthcare – ECPC

Member Brief• Information to Patients – ECPC Position Paper• Rare Cancers – ECPC Position Paper• Rare Diseases – Member Update on Commission

Communication and Rare Disease Day

• DG Sanco Roundtable• DG Sanco Europe for Patients Portal• Counterfeit Medicines – ECPC Position Paper /

Member Brief• Pharmacovigilance / Patient Safety – ECPC

Member Briefs

European Patients Right Day 2009

ECPC, together with other national and European patientorganisations, has always advocated for improvement ofthe rights of cancer patients. For example, the WarsawDeclaration, which was co-signed in 2005 by more than140 cancer advocates, called on policy makers, politiciansand key stakeholders urgently to "encourage and adoptnational Charters of Patients’ Rights according toEuropean guidelines". ECPC has played a major role inorganizing the Warsaw Summit.

On 18 April 2009, ECPC participated in the second"European Patients Rights Day" and encouraged itsmember organisations to communicate the "EuropeanCharter of Patients Rights", established by ActiveCitizenship Network. On that day, ECPC also published itsposition on Cancer Patients Rights, highlighting a numberof amendments that outline the specific needs of cancerpatients.

http://ecpc-online.org/rights

"European Action Against Rare Cancers" Campaign

In June 2009 a new campaign "European Action AgainstRare Cancers" has been launched. The new campaignurges European policy-makers to prioritize bettertreatment and care for patients with rare cancers withinthe framework of the new Commission Communication oncancer and other recent policy initiatives such as theCouncil Recommendation on Rare Diseases. The initiativehas established a Call to Action – an internationalpetition to be endorsed by organisations and privateindividuals. The Call to Action appeals to policy-makersand all other relevant stakeholders to initiate targetedactions and policies that will address the challenges thatrare cancers entail for the patients who are living with the

disease, for the physicians who are treating the patients,and for the researchers who are working to acquire moreknowledge in this field.

European Action Against Rare Cancers is a joint initiativeled by the European Society for Medical Oncology (ESMO),based on a partnership between ESMO, the EuropeanOrganisation for Rare Diseases (Eurordis), EuropeanCancer Patient Coalition (ECPC), Conticanet, theAssociation of European Cancer Leagues (ECL), theChronic Myeloid Leukaemia Support Group UK, theInternational Brain Tumour Alliance (IBTA), Orphanet,Chronic Myeloid Leukaemia Advocates Network and theEuropean Institute of Oncology (EIO) and NovartisOncology. The organisations collaborate as equal partnersand all decisions are made on the basis of consensus.See also http://www.rarecancers.eu

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ECPC Masterclass: Members in Action 2009

The ECPC Members in Action 2009" conference (held 24-25 Oct 2009 in Munich) which brought together morethan 100 representatives of patient organisations from 30European countries as well as other stakeholders todiscuss the pressing concerns for European citizensdiagnosed with Cancer.

“ECPC Members in Action 2009” particular aimed to

1. identify how ECPC, in close cooperation with itsmembers, can play a meaningful role in developingEurope-wide initiatives to tackle the significant andgrowing burden of cancer,

2. to identify ways how ECPC can encourage partnershipsand interactions between different stakeholders on thepan-European and national level,

3. to ensure that representatives of cancer patientorganisations have the information, tools, knowledgeand support they need to advocate on behalf ofpatients in their countries.

This 4th "Masterclass in cancer patient advocacy"represented the continued commitment to a processwhich has the aim that all cancer patients are able towork within a partnership, no matter where they live andwhich cancer they are affected by. This was reflected bythe diverse range of participants at “ECPC Members inAction 2009” which included patients, but also clinicians,academics, politicians and industry, all striving toencourage innovative, creative thinking in order tostimulate a change to the wider public perceptions oncancer.

A detailed report of the "ECPC Members in Action 2009"is available on the ECPC website.

http://ecpc-online.org/mc09

ECPC Advocacy Toolbox

ECPC provides a forum for European cancer patientgroups to share best practice and skills. Its "AdvocacyToolbox" was set up to provide helpful resources for cancerpatient advocates and organisations. In 2009, ECPC hasput a lot of effort in extending the toolbox to support itsmem-bership.

In 2009, the following tools were developed or updated:

• ECPC Conference Toolbox – the ECPC step by stepguide for organizing patient con-ferences, with ready touse templates.

• ECPC EU Elections 2009 Toolbox, with a guide,template letters, the "ECPC Manifesto against Cancer",a draft press release and a draft newsflash.

• ECPC Patients Rights Charter – which was translatedinto other languages by ECPC's members

• Building Good Patient Group Websites – a guide onhow to design and set up a websites for patientorganization

• EU Policy Handbook - 30-page handbook with a broadintroduction of EU cancer policy, legislative proceduresand measures.

http://ecpc-online.org/toolbox

ECPC’s Capacity Building work for ECPC Members

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All ECPC's members regularly receive newsletters withnews about ECPC's activities on behalf of theirmembership.

Member Updates 2009 • ECPC Member Background Briefing on the European

Parliament hearings of the EU Commissioners-designate(Jan 2010)

• EU 2020 Strategy (Jan 2010)• Falsified/Counterfeit Medicinal Products (Dec 2009) • Cross-Border Healthcare: Failure to reach political

agreement on a draft directive (Dec 2009) • Review of Animal Welfare Directive (Dec 2009) • European Parliament adopts resolution on smoke-free

environments (Nov 2009) • Impact Assessment of Clinical Trials Directive: Meeting

of patients' organisations with EU Commission (Nov 2009)

• European Commission on Health Inequalities (Oct 2009)

• Launch European Partnership for Action Against Cancer(Sept 2009)

• Launch Campaign European Action Against RareCancers (June 2009)

• EU draft legislation - patient access to information onprescription medicines in peril (June 2009)

• European Parliament votes for balance betweenmedical research and animal welfare (May 2009)

• Patient’s Rights Day (April 2009)• More cancer screening needed in EU, concludes

EC report (Jan 2009)

Press Releases 2009• World Cancer Day (Feb 2009) • European Partnership for Action against Cancer

(June 2009)• ECPC Members in Action Conference and ECPC Awards

(Oct 2009)

http://ecpc-online.org/updates

ECPC Member Updates and Press Releases

ECPC represented the cancers patients' perspectives whenspeaking at international meetings, including, amongothers:

� Biovision, The World Life Sciences Forum, France,03/2009

� European Parliament Magazine Conference “Action onCancer” Brussels, 03/2009

� EPPOSI Clinical Trials Workshop, Belgium, 04/2009� New York, USA, Putting Knowledge into Practice: First

transatlantic symposium on practical strategies toincrease colon cancer screening and save more lives(Felix Burda Foundation) 04/2009

� EPPOSI Workshop on Partnering for Rare DiseaseTherapy Development, Belgium, 04/2009

� 4th European Liver Patients Association “ViralHepatitis - a Continue Challenge”, Brasov, Romania,05/2009

� 7th International Conference of Organizations ofPeoples with CML and GIST “New Hori-zons in TreatingCancer”, Lisbon, Portugal, 06/2009

� EFGCP Workshop on centralized CTA and EthicsReviews, Belgium, 07/2009

� Lance Armstrong Cancer Summit, Ireland, 08/2009� World Conference on Lung Cancer, 08/2009� "Proactive Prostates" Initiative, Belgium, 09/2009� ECCO/ESMO Annual Congress, Berlin, Germany,

09/2009� London, UK. London School of Economics HTA Summer

School, 09/2009

� DG Research Workshop “Trends in translationalresearch”, Norway, 09/2009

� Launch Event of the DG SANCO European Partnershipon Action against Cancer, Belgium, 09/2009

� ECPC Members in Action Conference/4th ECPCMasterclass, Germany, 10/2009

� EPPOSI workshop on Rare Disease TherapyDevelopment (Specific challenges of rare Cancers),Belgium 10/2009

� Jolanta Kwasniewska's Foundation Childrens CancerEvent, Poland, 10/2009

� Chronic Disease & Health Management InternationalConference (Under the High Pa-tronage of thePresident of Romania), Bucharest, Romania, 10/2009

� 3rd International Cancer Control Congress (ICCC), Italy11/2009

� AIO Annual Meeting, Berlin, Germany, 11/2009� EONS Advisory Council Meeting, 11/2009� GASTRO 2009, UEGW / WCOG, UK, 11/2009� "Daily challenges of Patient's Lives" Exhibition at the

European Parliament, Belgium 12/2009� BBMRI Stakeholders Forum on Biobanking, Paris,

France, 12/2009� Training Course on “Increasing the awareness of young

people about cancer, Ankara, Turkey 12/2009� 3rd International “Blooming Plant” Oncology Days,

Ankara, Turkey 12/2009� over 15 workshops in the European Parliament on

Health-related issues including - Information to Patients,Counterfeits medicines and Cross Border Health Care

ECPC Presentations at Conferences in 2009

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ECPC actively maintains relationships with other Europeanorganisations, for example:

� European Cancer Organisation (ECCO)� European Society for Medical Oncology (ESMO)� European School of Oncology (ESO)� European Cancer Leagues (ECL)� European Oncology Nursing Society (EONS)� European Platform for Patient Organisations, Science

and Industry (EPPOSI)� European Organisation for Rare Diseases (EURORDIS)� European Organisation for research and Treatment of

Cancer (EORTC)

� European Federation of Pharmaceutical Industries(EFPIA)

� European Patients' Forum (EPF)� Europa Uomo� Europa Donna� European Forum for Good Clinical Practice (EFGCP)� European Haematological Association (EHA)� Drug Information Association (DIA)� International Agency for Research on Cancer (IARC)� International Union Against Cancer (UICC)� International Alliance of Patient Organisations (IAPO)� European Genetic Alliances' Network (EGAN)

Collaboration

ECPC's four key priority areas for 2010 are:

1. EU Policy:ECPC will continue to make sure cancer is a priority for action on the European health policy agenda by working closelywith the new EU Commission's DG Sanco, DG Research, DG Internal Market, DG Enterprise, DG Youth, the Health PolicyForum (HPF) , EU Committee of Experts on Rare Diseases, MEPs and the European Medicines Agency. Through our newBrussels office , we will continue with our EU Policy work, and look forward to collaborating with and supporting futureEU presidencies (Spain, Belgium) as well as MEPs Against Cancer.

2. Outreach to the national level supporting members:We are preparing two conferences for 2010. One focuses on the political process and will be held in Brussels, withanother focused on capacity building in CEE countries. We would like to invite members to become National Advisers toECPC, and will support initiatives wherever local (national) 'MACs groups' can be initiated. We also plan to extend ourvery popular 'Advocacy Toolbox', for example in the areas of social media and influencing policy. By setting up a 'RareCancers Action Group', we will be supporting ECPC member organisations that represent rarer and less common cancersto work together towards common goals. .

3. Building strategic partnerships: We want to expand our partnerships with other cancer groups & stakeholders in order to widen our cooperative work withother key patient advocacy groups, as well as further develop our relationships with professional organisations.

4. ECPC capacity building: We will expand its infrastructure, resources and, as much as possible in such challenging economic times, try to enlargethe funding base. We will further extend communications with regular website updates, newsflashes, member updates,press communications etc.

Outlook on ECPC’s Activities in 2010

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Funding Policy

ECPC welcomes EU grants, private donations, corporatedonations, grants and sponsorship to fund certain projectsand to enable the Coalition to grow and developindependently from com-mercial and governmentalinfluences.

We owe it to our membership and patients across Europe,who have placed their trust in us, to act in a fullydemocratic, independent and transparent manner, accordingto the highest standards of good governance. We derive ourlegitimacy from our membership, ECPC's constitution anddemocratically elected board of whom more than half arecancer survivors. We are most anxious to work on aconstructive approach together with all stakeholders toensure the credibility of patient groups is safeguarded.

ECPC will foster dialogue, and establish collaborativepartnerships, with all stakeholders whose decisions willaffect the chance of survival and quality of life of millionsof European cancer patients, including the industry.ECPC's relationship with funders is guided by its "Policyon Funding Arrangements with Commercial Partners" andECPC's "Transparency Statement". These principles areused to guide ECPC's decisions, applying to all potentialrelations with any company from any industry as well aswith governmental agencies. The purpose is to ensure thatECPC has a consistent and transparent approach toworking with any funder, and to clarify ECPC's position onfunding to its member organizations, commercialcompanies and the wider public.

http://ecpc-online.org/finances

Finances

Funding 2009

ECPC gratefully acknowledges the financial support of theEuropean Commission for work in the ongoing EU projects"Colorectal Cancer Screening Guidelines" and"RARECARE".

ECPC invites companies and individuals to becomeSustaining Partners with an annual unrestricted grant.ECPC's relationship with its Sustaining Partners is guidedby aforementioned policies. For 2009, ECPC would like tothank the following Sustaining Partners for theirunrestricted educational grants:• AMGEN • AstraZeneca • Ortho Biotech

• GSK• Eli Lilly• Merck• Novartis • Pfizer• Sanofi Aventis• Sanofi Pasteur MSD

In addition, the following companies have providedunrestricted educational grants for the "ECPC Members inAction Conference": Bristol-Myers Squibb, Eli Lilly, GlaxoSmith Kline, Novartis and Pfizer.

ECPC also gratefully acknowledges the continued supportof the European School of Oncology (ESO), e.g. forsupporting the maintenance of the ECPC website.

ECPC Accounts 2009Internal Balance Sheet as per 31 December 2009

ASSETS SIDE

EUR EURA. Current Assets

Trade accounts receivables 40.000,00

Cash Assets, Bank Deposits

Cash Assets 1.007,71Kreissparkasse München 36.255,47Lloyds TSB 17.451,43Lloyds TSB fixed term deposit 282.030,00Rabobank 15.044,37Rabobank savings account 180.000,00 531.788,98

571.788,98

LIABLITIES SIDE

EURA. Equity

Status as per 1.1.2009 420.964,20

Receipts 411.889,51Expenses - 321.064,82

Status as per 31.12.2009 511.788,98

B. Deferred income and accrued expenses 60.000,00

571.788,98

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Profit and Loss Account for the period of January 1 until December 31, 2009

Legal Registration

ECPC is legally registered in Utrecht, The Netherlands, Register-Nr. 30211815. Registered address is ECPC, Oosterhaven29, 1671 AM Medemblik, The Netherlands.

ECPC has non-profit status (ANBI = Algemeen Nut Beogende Instelling, Public Welfare Institution) with fiscal number816853575, re-confirmed on 23 October 2009 by the Dutch tax authorities in Hertogenbosch, The Netherlands.

2009Income EUR

Unrestricted grants ECPC Sustaining Partners 330.000,00Project sponsoring (in 2009: ECPC Masterclass Conference) 45.000,00Cancerworld.org/ESO Sponsoring 5.000,00EU Funding for EU Research Projectsin 2009 Project "Colorectoral Cancer Screening Guidelines” 23.685,60Other Income 1.165,00Interests 2.027,02Refund of expenses 5.011,89

411.889,51

Expenses/Expenditures

200 ECPC projects

201 MAC project 380,00202 ECPC Masterclass Conference 2009 49.809,49205 EU Research project expenditures 7.088,76

57.278,25

300 ECPC Office Brussels

301 Office rent and administrative support (until 31.12.2008) 0,00301a Office rent (from 1.9.2009) 3.044,36301b Political Affairs Manager (from 1.9.2009) 20.333,96302 Director EU Policy (until 30.4.2009) 24.485,30303 Assistant Head of EU Policy 6.000,00

53.863,62

400 Operating and administrative costs

401 Staff costs Head Office (Director and Administrator/Secretariat) 151.860,61402 Office equipment, porti 1.832,60403 IT/e Room 3.443,26404 Telephone 1.349,46405 Marketing/communication/PR 3.669,39406 Legal and Tax Consulting Services 14.227,42407 Miscellaneous 3.316,84

179.699,58

500 Costs of the Board of Directors 19.750,13

600 Losses from exchange differences 10.473,24

Expenses/expenditures in total 321.064,82

Excess of earnings over expenses 90.824,69

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The European Cancer Patient Coalition (ECPC) and itsmember organizations call on all candidates for theEuropean Parliament elections to help us fight cancer intheir country and across the European Union. One third ofEU citizens are diagnosed with cancer and cancer killsabout 1.7 million each year. We are aware that there areconsiderable inequalities in health status and cancersurvival rates within and between Member States of theEuropean Union. These ine-qualities will only increaseunder the current economic crisis as our health and socialsystems come under financial pressure.

We call on you to work towards implementing theEuropean Parliament Cancer Resolution by supporting usin our campaign to:

• Encourage and adopt national Charters for patients'rights according to European guidelines to ensure thatthe rights of cancer patients are upheld and enforced.

• Urgently develop and, where existing, improve nationalcancer plans, setting priorities and effectively allocatingresources for improving cancer control and researchacross the European Union, paying attention to rare ordifficult to treat cancers.

• Ensure cancer patients are included in formulating andmonitoring all research, legislation and policies thataffect their health.

• Invest in cancer prevention in Member States andimplement the Council Recommendation on CancerScreening of 2003 by setting up or improving nationalhigh quality population-based screening programmes.

• Vigorously promote cancer awareness in the generalpublic through the existing Europe against CancerCode.

• Make timely, high quality and up to date information,diagnosis, treatment and care avail-able for all cancerpatients in each European Member State.

• Firmly tackle the socio-economic and geographic divide,which leads to inequalities in cancer control

• Oppose discrimination in the latest cancer treatmentbecause of age, race, gender and domicile.

ECPC Cancer Manifesto

How to contact ECPC

ECPC Head OfficeJan Geissler - ECPC DirectorE-Mail: jan.geissler@ecpc-online.org

Michi Geissler – ECPC SecretariatE-Mail: michi.geissler@ecpc-online.org

European Cancer Patient CoalitionAm Rothenanger 1b85521 Riemerling, GermanyTel.: +49 89 62836807Fax: +49 89 62836808E-Mail: info@ecpc-online.org

ECPC Brussels OfficeDenis Horgan - ECPC Political Affairs ManagerRue de la Loi, 26, 1040 Brussels, BelgiumTel.: +32 2 8888943E-Mail: denis.horgan@ecpc-online.org

ECPC Websitehttp://www.ecpc-online.org

Join ECPC

We welcome all European Cancer Patient Organisations as members of ECPC. Membership is free, please contact us atinfo@ecpc-online.org or visit the ECPC website at http://ecpc-online.org/members to download the application form.Join us in the fight against cancer!

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Impressions