Joining the IKCC Network:International Advocacy

For Kidney Cancer Patients –

Through IKCC…

Friday 17th April 2015 Anne Wilson – Australia

Markus Wartenberg – Germany

19th of Sept. 2009 in Berlin

Identifying common needs…

Steering Committee…

EXPANDING CIRCLES (Frankfurt, Rome, London, Amsterdam)

Joint Chairs: Deb Maskens (CDN), Rachel Giles (NL)

Governance: Anne Wilson (AUS), Michael Herbst (RSA)

KC Medicals: Rachel Giles (NL) - Research

Berit Eberhardt (DE) - State of the Art Treatment & Care

Support/Mentoring: Rose Woodward (GB), Michael Herbst (RSA)

(Incl. Health Policy and HTA)

Communications: Joyce Graff (USA)

Management Services to IKCC-LT

Advisor to the LT: Markus Wartenberg (DE)

Admin. Coordinator to the LT: Julia Black (GB)

Mid of 2013: New Leadership Team (LT)

The global collaboration of

national patient groups supporting those

affected by kidney cancer:

To empower one another

To raise awareness of kidney cancer

To speak with a common voice

in research and treatment and care.

The MISSION of IKCC…

Empowering organisations

to improve the lives of those

affected by kidney cancer worldwide.

The VISION of IKCC…

A comprehensive global network of

kidney cancer patient groups –

a peer-to-peer partner with

a strong common and influential voice.

The long-term POSITIONING of IKCC…

The VALUES of IKCC…

Patientcentered &democratic

Professional

Collaborativebut independent

TransparentEthical

Culturallysensitive

(respectful)

Innovative

Joining forces fortreatment quality, innovations and changes…

Healthcare

Industry

(nat. / intl.)

Patients,

Patient-Groups:

Intl. Networks

Physicians,

Medical Profess.

(Medical Networks)

Communicationand Cooperation

Patients Needs and ExperiencesClinical Practice: Access to - and Quality of Treatment & Care

Clinical Research/Clinical TrialsBiology, Molecular Genetics, Pathology

Reasons for such a “Coalition”…

SharingInformation Know how,

Best Practice

DevelopingCommon

Positions…

RaisingAwareness

of KC

Havingone Global

Voice…

Passion forChange &

International

Networking

Joining Forces to overcome

Unmet Medic.,

Needs in KC

IKCCNetwor

k

Objective 1:Raising awareness of Kidney Cancer as a significant and increasing health issue

Objective 2:Encouraging early detection and access to quality treatment and care

Objective 2:Encouraging early detection and access to quality treatment and care

Objective 3:Enhancing the exchange of information and best practices

Objective 4:Promoting collaboration and patient involvement in clinical research

Objective 5:Supporting existing patient organisations and encouraging the creation of new groups

Legal Entity: Foundation, registered in The Netherlands under:

Stichting Intl. Kidney Cancer Coalition, Reg.-No. KvK 62070665

Registered:Stichting IKCC - 't Ven 30 - 1115HB Duivendrecht - The Netherlands

Board Members: R. Giles (NL) (Chair) * D. Maskens (CDN) (Vice-Chair)

B. Eberhardt (D) * J. Graff (USA) * M. Herbst (ZA) *

A. Wilson (AUS) * R. Woodward (GB)

Services: Administrative Coordinator: Julia Black

Advice / Mgmt. Services / Financial Operations: Markus Wartenberg

Available - Deed of Incorporation (Dutch/English)

Documents: - Code of Conduct

- Annual Conference Reports

- Patient Charter for Global Kidney Cancer Care

9th Dec. 2015: The IKCC Foundation

Overview: Activities, services, projects – with “direct 2015 budget implications”…

2015-ConferenceEXPANDING CIRCLESMorristown, NJ, USA

01

Task Force/Consensus Roundtable

on “Papillary KC”06

IKCC-LeadershipGlobal LT- & Working-Meetings (incl. TC's)

02

Presence atMedical Conferences & Networking Initiatives

03

INTERNAL: Office, Half-Time-Prof. Admin.-/Orga.-Costs, Advise/Mgmt.-Services (00)

Book ofCourage and Hope

(Global Patient Stories)05

Annual Report 2015(incl.

Conference Report)04

• Four IKCC Conferences were successfully organised in 2010 in Frankfurt – in 2012 in Rome - in 2013 in Windsor/London and in 2014 in Amsterdam. This will be the first IKCC-Conference outside Europe…

• The 5th IKCC Annual Conference will be held from 16th to 18th of April 2015 in Morristown, New Jersey, USA and aims to provide KC patient advocates with an opportunity to share experience and best practice, as well as to learn about advances and challenges in the treatment of rare cancers.

• The three day conference will focus on research, treatment and advocacy/capacity building.

• Leading Global KC Experts will join to present the latest news and answer questions.

• Participants will attend from 20 countries covering Patient Advocates, Medical Experts and Representatives of the Healthcare Industry…

2015-Conference EXPANDING CIRCLES

Global Meeting-/Working-Budget

for the LT or members of the LT/AC

Face to Face LT-/AC-Meetings –linked to the IKCC Conference 2015 in Morristown

Face to Face Meetings with Industry Partners – mainly in New Jersey – late summer 2015

Face to Face LT-Meeting (Annual Working & Strategy Meeting)early July 2015 (near Paris)

Face to Face Meetings of LT-Members to cooperate,exchange an move activities/projects further on

Teleconferences on a regular basis with the LTand in different working-/project groups

Global LT- & Working-Meetings (incl. TC's)

Participating in important Conferences and Networking Initiatives

(…if no grants/scholarships are available…)

Important Oncology-, Urology-, Kidney Cancer Meetings/Conferences

Cancer Patient Advocacy Meetings/Conferences

Initiatives where IKCC is involved

Travelling Expenses to meet different Stakeholders e.g.KC Medical Experts, Medical Societies, Sustaining Partners (Industry)

Occasions to generate information or initiate collaborations

Training/Education for LT-Members

Presence at Medical Conferences & Networking Initiatives

Conference/Meeting Calendar 2015 (Excerpt):

26. – 28. Feb. ASCO-GU Orlando, Florida

20. – 24. MarchEAU Congress Madrid, Spain

16. – 18. April IKCC-Conference 2015 Morristown, NJ, USA

24. + 25. April KCA European Symposium Lyon, France

16. – 21. May AUA Annual Meeting New Orleans, USA

29. May – 02. June ASCO Annual Meeting Chicago, USA

14. – 17. June HTAi Conference Oslo, Norway

03. – 05. July IKCC Board Meeting Chantilly, France

09. – 12. July SmartStart Training Frankfurt, Germany

25. – 29. Sept. ECCO/ESMO Vienna, Austria

09. – 10. Oct. EORTC/SPAEN Training Course Brussels, Belgium

Late Oct. KCA Chicago Meeting Chicago, USA

Presence at Medical Conferences & Networking Initiatives

NEW in 2015: IKCC Activity Report

Target Audience: = Pharmas, Medical Experts, Researchers,Regulators, Payers, Patient Adv. Groups, Patients with English Skills

Contains our Projects, Activities, Engagement

Overview Global KC Community (Image Tool)

Will also include “Conference Report” fromour Annual Conference 2015 in Morristown

Available as PDF and a limited number of printed copies

Release: Summer 2015

Activity Report 2014/2015 (incl. Conference Report)

• IKCC is recognized as an international disease-specific“Cancer Patient Advocacy Network”

• We started to build up relationships with many networks,societies and other “Cancer Patient Advocacy Networks”

• Initiative to be involved in the next EAU KC-Guidelines

• RCE – Rare Cancers Europe – Multi-Stakeholder Initiative

• SmartStart Training Course – March 20 to 22, 2015 in Frankfurt(funded by Bayer Global Advocacy)

• EORTC Training Course “Understanding Clinical Research in Cancer” –October 9 to 10, 2015 in Brussels

• Etc.

Projects, where IKCCis already involved as a partner/member…

Affiliate Organisation Criteria/Application Voting Right

Associated Individual By Invitation/Application Voting Right

(Healthcare Professionals)

Supporter Application No Voting Right

Joining the IKCC…

Joining as an Affiliate Organisation

Our organization has a focus on providing services and/or supporting patients with kidney cancer and raising awareness, promoting research, or empowering organisations that are focused on supporting those affected by kidney cancer.

Is recognized and/or registered as a non-profit organization. Is willing to abide by the IKCC’s Code of Conduct in addition to

adhering to the strict ethical guidelines for charities and non-profits according to their own national contexts

Is willing to work with and co-operate with other organisations having the same objectives

 Affiliate organisations have VOTING RIGHTS

Joining as an Associated Individual

By invitation (complete the application if you would like to be invited.)

Physicians and healthcare professionals I am a clinician or allied healthcare professional and wish to

express my interest in becoming an Associated Individual. VOTING RIGHTS

Joining IKCC as a Supporter

Organisations not yet meeting the full criteria of an Affiliate Organisation

or individuals with an interest in kidney cancer patient support and advocacy may join IKCC as a Supporter.

Supporters do not have voting rights in matters pertaining to the IKCC.

IKCC

Please consider joining the IKCC!