GROUP ASSIGNMENT KRAKOW (April 2004) Rules of the gameec.europa.eu/health/ph_projects/2002/rare_diseases/fp_raredis_2002_a3... · Rules of the game You’ll be working in the same

EUROPEAN FEDERATION FOR NEUROFIBROMATOSIS ASSOCIATIONS REVISED REPORT Project: establishing European Neurofibromatosis Network

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This document is part of a program funded by the European Commission

Office: Slachthuisstraat 73 - 9100 St.Niklaas Belgium - T +32.3.766.13.41 - [email protected] - www.nfeurope.org

Training program – sample work shop assignments

GROUP ASSIGNMENT KRAKOW (April 2004)

Rules of the game

You’ll be working in the same small group for about the whole training workshop. A

chairperson for each group has been appointed.

For breaks and meals, please follow the time schedule. Don’t leave the hotel !!

The assignment is not only focussing on organisational skills. It is definitely also about social

and communicative skills. Therefore:

- Participate

- Contribute to finding solutions, options, possibilities

- Don’t agree unthinkingly but give and take

- Show respect

- Don’t interrupt too soon

- Stick to the subject

- Give and ask information

- Avoid lengthy monologues

- Not more than one question at a time

- Be tactful and strive for consensus

- Explain if people don’t understand

- Avoid disturbing non-verbal messages

- Do realise that everyone’s contribution is valuable

- Take care of creating a pleasant atmosphere

- Ventilate frustrations soon instead of withdrawing from the group

- Respect language difficulties but don’t expect lengthy clarifications for your person

only all the time

Practicalities:

There will be a “jury” visiting your group at regular times. This is an occasion to ask for

information. But you’ll be also asked to generally present your results thusfar and perhaps to

elaborate things in more detail. It might also happen that an additional assignment/problem is

presented that you should consider and solve. The “jury will critically review your work.

There is background information for you to use. If no information on certain issues is

available, rely on realistic, founded estimates, considerations, situations (things you know

from your country, your association). For instance: don’t just think that you’ll probably get a

meeting room for 20 persons free of charge somewhere, but state where such a room is

indeed available in your country ! If you expect a scientist to give a talk to your association

for free, give us a name !

Consider things in detail, not just vague ideas or broad lines. The plans you come up with

should be applicable almost right away.

Saturday afternoon your group is expected to present its findings in plenary. So take notes

and reserve enough time for a write-up. Every member of your group should be involved in

reporting back in plenary. The way you report back should be catchy and interesting but

strictly limited to 20 minutes. It should take at least 15 minutes. The plenum can ask

questions.

Don’t give away your ideas to other groups !!

Show us what you’ve got !!


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Sketch of the situation and of ‘your’ NF-association

You’re member of the board of a rather young NF-association. After four months of pondering and deliberating (Sept. – Dec. 2002) between three initiators, and two months (Jan. – Febr. 2003) to prepare and announce the kick-off meeting (March 2003), the association had an almost flying start with already 130 people showing an interest and expressing their needs or expectations. You’re one of the four people who responded positively to the request to join the volunteer board. Together with your colleague board members, you approached the first working-year fairly cautious; you wanted to see where things would lead, whether people would indeed stay interested, whether the initiative would catch on. Also, there wasn’t a lot of money to work with. But things worked out well during the first year or so and you’ve become more confident and ambitious. Together you were also able to secure more money for the working year 2004-2005. Now you’ve decided to go for it, to try and build an association of importance in size as well as influence, and an association that really makes a difference for people confronted with NF. For the second working year (01/09/2004 – 31/08/2005), the board has therefore decided for the methodology of ‘management by objectives’ and set itself five concrete targets: Since summertime is traditionally a calmer period, you’ve organised several board meetings in a row. For the next two days we’ll pretend that these board meetings are taking place and that you will work together on concretizing your plan of action. You are going to consider, already in detail, what you’ll be doing to achieve the targets, how you will do things, what instruments you’re planning to use, sketch some of these, consider costs, a.s.o. Background information on your association

Initiated: September 2002 Members today: - individual ‘sympathizers’ 39 - families 210 (NF1: 198) (est. N of NF1-patients: 3300 (1/3000) (NF2: 12) (est. N of NF2 patients: 200 (1/50 000) 249 Staff (volunteers) : - board members 7 - occasional helpers 8 (practical help) 15 Budget 2004 - 2005 (in ): - membership fees 7 470 (newsletter included) - municipal funding 1 000 - government funding 7 500 (funding scheme voluntary sector)


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- gifts 6 500 - miscellaneous 530 total: 23 000 Costs 2003 - 2004 (in ):

- basic ‘office’ costs’ 5 000 (communication, postage, office equipment, reimbursements board members, stationary, a rudimentary newsletter (3/year, 300 copies/8 pages, cost per volume = 275 printing + 720 postage) …)

- other 5 000 (a.o. organisational costs, printing in addition to newsletter, fees, rent, publicity, …)

total: 10 000 Administrative office: at the ‘kitchen table(s)’ Activities + services thusfar: - 2002 September - December: initiators (3) get together in order to discuss aims,

possible activities and services, how to find interested people

- 2003 January - February: inviting interest (simple folder in genetic centres, article in national newspaper, by word of mouth, …)

March: first meeting (explaining the initiative, recruiting members and collaboration, investigating needs and expectations, 130 people attended meeting at genetic centre (no charge for meeting room)

March - December establishing a team of volunteer workers (7) answering requests for information, planning and budgeting remainder 2003, statutes of association, developing membership, first newsletter (= report of kick off meeting)

June + September + December:discussion groups in 3 areas; under the guidance of a board member, average attendance: 17

- 2004 Februry half day ‘introductory symposium’ on medical and

genetic aspects of NF (140 people attending)

March + June (planned) discussion groups in 3 areas; under the guidance of a board member, average attendance: 18

March - August: newsletter, answering requests for information and emotional support, developing a first information folder (simple, 1 sheet, photocopy, 500), membership recruitment (mainly through referral by sympathetic genetic centre, word of mouth and a preliminary website), securing funding and other money, daily management, meetings of board members (once in two months)

May – August: planning of working year 2004-2005 (01/09 – 31/08)


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Objectives - Targets

1. By the end of the working year, membership of NF-families should be doubled; proportionately, attendance at activities and use of services should be increased.

Background: Your organisation counts 249 members (210 + 39) today. Only six percent of the estimated number of people with NF in your country has joined so far. There are however already people calling upon your organisation without becoming a member (and paying a fee). A larger number of members will increase your credibility, influence, and income; more knowledge about perceptions, experiences, difficulties surrounding NF will become available. In all, more members could increase the strength of your association in several fields. At a personal level, knowing that you are working hard for a considerable number of people is more rewarding and indeed helps to stay motivated.

Some things that could be considered: - How to locate potential members (who knows where to find them)? - Which instruments/channels to choose to conduct a membership

campaign? - Costs - Timing and strategy - How to ‘convince’ people (attractiveness, appeal of your association (a

good offer)) - Consequences of growing membership? - Possible links with other targets? - …

2. Specific activities and services for youngsters (children, adolescents and young

adults) will be arranged.

Background: Most of the time it are always parents attending meetings and activities, who contact you over the phone for information or a personal talk. You therefore only reach younger patients indirectly. Your organisation however also wants to matter for them and offer solutions for the problems they encounter (learning and perhaps other disabilities, dependency, employment, …) the things they worry about (friends, recreation, feeling, ‘abnormal’ or an ‘outsider’...) and offer ‘customer-tailored’ information. You want to set up activities and services that are beneficial and of interest for the ‘youngsters’ right now, but are also future-oriented, offering them sound foundations for life.


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Some things that could be considered:

- “attractive” activities and services linked to youngsters needs and expectations

- “beneficial” services and activities for youngsters - Costs - Timing and strategies, means - Practicalities - Scale - …

3. A national awareness day will be organised

Background: Traditionally, each year beginning of May, in several countries in Europe a public awareness campaign on Neurofibromatosis is being organised. It is a one day activity aimed at catching the attention of the public at large, policy-makers, and the broad professional field on the consequences of NF and the needs of people affected. Getting in the picture, putting neurofibromatosis on the map, inevitably means using the media. The final outcome of the awareness day should be to get as much attention for NF as possible. There is no specific theme for this awareness day laid down (yet?)


- How to make it newsworthy (an interesting “message”, approach, event) - How to “approach” the media - Timing and strategy - Costs - Content - Consequences - …

4. People with NF (and their families), people at risk, and relevant professionals will be more fully informed about the medical, genetic and psychological aspects of NF.

Background: Providing recent and correct information on various aspects of NF is for

most associations of crucial importance. Thusfar you had a half-day symposium, there is a rudimentary newsletter and 1 sheet leaflet. Information for people affected and their families is indeed important to gain control over their situation, to come to terms with consequences, to learn to handle them and to cope. In sum, solid information arms people, makes them less dependent of professionals and offers them the possibility to choose. Patient associations also often offer their members (and others) practical information by bringing experiences and models of good practise together for the profit of others. Associations wish to inform various audiences: their members, carers, educators, professionals, people at risk a.s.o. The information aimed at “outsiders”, is often about gaining understanding and developing a special approach for the particular needs of people with NF.


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- Instruments - Validity of information - Accessibility - Target audiences - Timing and strategy - Completeness, comprehensiveness - Costs - …

5. The association will secure a more solid operational foundation Background: Reaching the above targets without “solid” foundations is impossible. You

are therefore looking for a healthy, future-oriented structure, reliable sources of income, a supportive network, committed volunteers and helpers, perhaps secretarial offices, professional staff (?) a.s.o.

More solid operational foundations will safeguard the future, since the association as such becomes less dependent on individual’s sometimes unstable commitment. Tasks and responsibilities can be delegated or split up (which could prevent burnout or oligarchy), specific expertise could be attracted, a.s.o. It goes without a saying that a solid financial base will also prove very helpful.


- How could the future organisational chart of your association look like? - What is needed to achieve this? - Where to find it? - How to get it? (strategies and possibilities, instruments) - Costs - …


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Background info Guidelines for organisations providing information on rare diseases Preamble All people, irrespective of race, creed or nationality should be entitled to a high standard of relevant health care. The highest standards and ethics in the practice of information service should be promoted. Access to information is a fundamental right, whether the disease is common or rare. Information on rare diseases is one of the most important services that patient groups can provide. This is specifically because people with rare diseases feel isolated by the rarity of the condition affecting them or their family and the additional issues raised by the genetic cause of most rare diseases. It is also because of barriers that exist in accessing information on rare diseases that is appropriate, validated and understandable. There is confusion because many rare diseases are complex syndromes with several definitions and synonyms, which isolates affected people even more. Introduction Patient driven groups are an unparalleled source of information on rare diseases. They have developed an expertise that is unique and which should be exploited to the full, so long as they adhere to the good practices which have been identified and practised by existing groups throughout Europe and which are enshrined within these guidelines. It is always the responsibility of the information service to have high quality information adapted to the needs of the enquirer whatever their reason may be for contacting the service. In providing information, services should always act with respect and empathy. These recommendations are intended as a guide to recognise good practice and make every effort to include that good practice within the information service being developed or reviewed. Information provided is based on the experience of patients. It is recognised that this will be dictated, to some extent, by available resources, and whether the service is delivered by volunteers or paid staff. However there are certain core values that should be practised regardless of size, maturity and resources. They apply universally, for small groups as well are larger ones, and they constitute long term goals to be achieved. Their implementation should reflect the cultural, political, scope and resources background of each group. Finally information is just one of the many services patients ’ organisations can provide. Organisational principles - PATIENTS’ EXPERTISE : Recognise the importance of patients and families as a source of information, expertise and empathy. Ensure that services will involve people with rare diseases at all levels of corporate governance and service development where possible. - INCLUSIVENESS : Recognise the value of family and carers and include them where appropriate, as people affected with a rare disease may have physical limitations to move, or may suffer from neurological impairment. There should be no distinction among members whether patients or not. - ACCESSIBILITY : Provide information services in settings that are accessible and ensure confidentiality. Severe disabilities are common features of rare diseases. Whenever possible, these services should be free of charge for people with rare diseases and their families.


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- SENSITIVITY : Ensure appropriate and effective services by involving people who reflect the voices of users and carers, as experts in defining their own wishes and needs. Among wishes and needs, identify questions on genetic inheritance as a very frequent need, as a large majority of rare diseases are of genetic origin. - HUMAN RESOURCES OBLIGATIONS : Deliver an information service by staff whether voluntary or salaried who are supported, resourceful and accountable. - ADVISORY EXPERT COMMITTEE : As information on rare diseases is most often sparse and with limited sources, establish an advisory expert committee with experts to whom to refer social, medical or scientific questions (social workers, lawyers, clinicians and fundamental research scientists).Such a committee could include geneticists when appropriate. Ethical principles - CONFIDENTIALITY AND USE OF INFORMATION : Respect data confidentiality at all times and person anonymity unless directed otherwise in writing by the individual concerned. Ensure that collected data always has a purpose and is used and recorded accordingly. Any data for statistical research or evidence purposes should only be disseminated to a larger audience if anonymised, and following consent. - LOYALTY : Ensure that the operator ’s primary loyalty is to the person to whom they are delivering information, and always in a manner that protects confidentiality. - ANTI-DISCRIMINATION RULES : Consider any person without distinction and prevent from discriminating in terms of social situation, education, religion, gender, sexuality, ethnic or geographical origin. Services are accessible to people with rare diseases of all cultures, beliefs, ethnic and linguistic backgrounds. - CONFLICTS OF INTEREST : Strive to be independent, autonomous and minimise conflicts of interest. - SIGN-POSTING : Rare diseases have major impact in everyday life and not only on patient ’s health. Have in mind the organisation ’s limits and make reasonable efforts to offer multi-disciplinary approaches on medical and paramedical subjects, legal and political aspects, social law, ethics, finances … Know to whom enquiries should be referred. - OBJECTIVITY : Ensure that advice remains objective and non judgemental.


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Procedural principles Goals :to provide validated, up-to-date and understandable information on all aspects of the disease to those affected, their families, and the professionals working with them. How to get there: - FIELD OF EXPERTISE AND DIAGNOSIS CHECK : Define the particular area of expertise unique to the information service. Rare diseases are often complex syndromes with various definitions and synonyms. An enquirer may be calling in the absence of an exact diagnosis, or to obtain information on an already confirmed diagnosis. As rare diseases and syndromes have various names and synonyms, it is crucial to verify the enquirer is contacting the appropriate service. - COMPLEMENTARY ROLE : Ensure that the information service only consists of explanation, translation in an understandable language and complementary information. The service does not intend to make a diagnosis or give medical advice. - VALIDATION : Revisit information regularly and check its validity systematically. - IMPACT OF INFORMATION : Be aware that information may be interpreted differently by people according to their emotional state, education and experience. Adjust your approach accordingly, being truthful without causing alarm and letting the enquirer set the pace at which information is given. Prognosis or progression of a rare disease is often severe. - CONTINUOUS EDUCATION : Keep track with medical knowledge and medical progress, train volunteers and staff in a continuous manner. - ISOLATED PEOPLE : Facilitate contacts between isolated people; establish structured channels of information for very rare diseases. - COMMUNICATION SKILLS : Ensure that the enquirer is the centre of attention by demonstrating high communication skills, setting aside personal issues and allowing the enquiry to take as much time as is needed. - CLARITY : Ensure that all methods in which information is delivered (information tools)are constantly monitored for accuracy, clarity and accessibility in terms of content, format and appearance. Source: Eurordis, the European Organisation for Rare Diseases, a patient-driven network of rare disease organisations and individuals. Founded in 1997, Eurordis comprises 210 associations in 16 European countries. These guidelines are one of the achievements of a project supported by the Rare Diseases Programme of Directorate C :«Public Health and Risk Assessment » of the European Commission, nd Association Française contre les Myopathies.

More information is available on : www.eurordis.org and www.europa.eu.int/comm/health.


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Background info Some aspects surrounding Neurofibromatosis

I. Medical aspects

1. Diagnosis of NF and overview of clinical problems 2. Neurofibromatosis Type 2 3. Neurological aspects of neurofibromatosis 4. Learning disabilities and neurofibromatosis 5. Communication disorders in children with NF1 6. Neurosurgical aspects of neurofibromatosis 7. Neurofibromatosis and ocular characteristics 8. Neurofibromatosis and the skin 9. Neurofibromatosis and cancer: incidence and treatment 10. Plastic surgery in neurofibromatosis 11. Orthopaedic aspects of neurofibromatosis 12. The endocrine system in neurofibromatosis 13. The child with neurofibromatosis

II. Genetic aspects

1. The genetics of neurofibromatosis 2. Molecular genetics in neurofibromatosis 3. Genetic counselling and neurofibromatosis

III. Psychological aspects

1. The influence of neurofibromatosis on the adolescent 2. The influence of neurofibromatosis on the family 3. Psychosocial aspects and physical appearance in neurofibromatosis


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Background info The public media in a nutshelf

Characteristics:

printed media + - fast and broad range dependent on a “gatekeeper” (journalist) cheap access and purchase no influence on reception can be used at one’s own initiative general media = general approach different channels heterogeneous and therefore average high credibility sometimes context or interest biased gives access to ‘inaccessible’ places printed media can be saved not intrusive, respecting privacy audio-visual media most of the above and most of the above and: people can choose tied to a time and place image-oriented image- and rating-oriented heterogeneous and therefore average and/or extreme “superficial” Newsworthiness of a “message”, an event

- Something current and topical - Something important and intense - Something deviating from the normal; something unexpected, rare, .. - Something raising more interest - Something related to an “authority” - Something related to another perhaps earlier fact, but differing from it.

Therefore, the public media often: - prefer once-only facts or events - dramatise to draw attention and raise interest - personalise

Access to public media = reaching and passing the gatekeeper (journalist) by means of e.g.: Press conference Press file Press release Printed media: Newspapers: - national (15) - regional/local (25) - regional/local advertisers (150) Magazines (weekly, every two weeks, once a month, …) - general (informational, economic, health, women, men, recreation, …) (50) - specific (ideological, economical, satirical, scientific, medical, …) (1000) Audio-visual media: - Public (5), commercial (5), private radio (regional, national, local) (113) - Public (2), commercial (10), private TV (regional, national, local) (15)


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Background info

Indicative prices (in ) Audio-visual equipment (rent per day)

- LCD- Data/Video projector: 265,00 euro - Tie-pin microphone + amplifier + speakers : 270,00 euro - Wireless microphone : 75,00 euro - Slide projector: 15,00 euro - camera : 35,00 euro

Catering (p/p):

- Coffee break: 3 euro - Lunch: sandwiches: 7 euro

menu of the day: 20 euro - Dinner: 30 euro - Reception: 10 euro

Insurance (volunteers)

- 25 euro year/person - 5 euro day/person

Layout (VAT excl.)

- Text pages: 24 pages at 35 euro - Book cover: 280 euro - Folder (two-sided): 300 euro - Poster 200 euro

Lodging

- Camping grounds (with facilities): 3,00 euro per night - Hotel (+ breakfast)

- Single: 90 euro/night - Double: 110 euro/night

- Hostel: night warm meal lunch (sandwiches) packed lunch

adults 15,75 euro 8,25 5,00 5,50 children (-12 yrs): 12.50 euro 6,60 4,00 4,50

Meeting rooms (basic audio-visual equipment (flipchart, TV & video, screen) included, extra’s not included (see above))

Capacity 1 day/euro day/euro evening/euro 20 200 150 100 40 250 175 125 80 350 225 175

120 400 250 200 250 600 350 300


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Personnel

- Hired externally: 200 euro/day - Full time employed social worker (10 years experience): 45 560 euro/year

(no job experience) 38 162 euro/year Photocopies

- 0.03 (per copy, < 100) - 0.028 (per copy, < 1000) - 0.026 (per copy, > 1000)

Postage:

Letters

< 50 gr 0.49 euro 50-100 gr 0.79 euro

100-350 gr 0.98 euro 350gr.-1 kg 2.45 euro

Printed matter

< 50 gr 0.41 euro 50-100 gr 0.70 euro

100-350 gr 0.82 euro 350gr.-1 kg 2.05 euro

Periodicals: 0.20 euro/copy Printing (VAT not included)

- Book (400 pages, 500 copies): 3700 euro (300 euro per additional 100 copies) - Folder (2500 copies, quadri): 425 euro (100 euro per additional 1000 copies) - Poster (format 60x84 cm., 250 copies, one color): 310 euro (33 euro per additional 100

copies) - Poster (format 60x84 cm., 250 copies, quadri): 530 euro (38 euro per additional 100 copies) - Brochure (8 pages, quadri, 1000 copies): 1400 euro (65 euro per additional 100

copies) Speakers (professional)

- 150 euro (excl. transportation) Stationary

- Letterhead paper (2500 copies, logo quadri +print): 395 euro - Business cards (1000 copies, logo quadri + print) 150 euro - Enveloppes (2500 copies, logo quadri + print) : 475 (small)

580 (medium) 810 (large)


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Transportation (reimbursement)

- Car: 0.20 euro/km - Train : 0.11 euro/km

Web design and hosting

- Economy 262 euro (5 pages, very basic) - Deluxe 521 euro (10 pages + a.o. contact formular) - Business 1040 euro (15 pages, + a.o. dropdown menu’s) - Super 2725 euro (30 pages, + a.o. interactivity) - Elite 4969 euro (50 pages, + a.o. flash & registration with 1550

search engines) For other services or products, please estimate realistically


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Background info Results brainstorm Sint Niklaas

Scheme 1: particular problems of NF-patients and their family - Strain – insecurity about the future in terms of diagnosis (NF or not) – severeness - Isolation - Judgement / discrimination - Acceptance / shame - Panic or fear because too much or too little information - Special attention – guidance - Guilt – frustration – aggression - Family imbalance – stress between partners, (healthy) children - Problems to understand / grasp - (life long) dependency - independent living - financial insecurity (treatment – job – benefits) - education and occupation (job) - neglect - confrontation with “other” people - uncertainty - communication - different perspectives of future in family - life-sentence – no cure - misdiagnosis – loss of confidence - suffering - restriction to ambitions - lack of information resources - aggression - when to tell child about NF - late diagnosis - rejection - feeling of illness although no physical consequences

Scheme 2: What is needed to cope with the problems of NF patients and their family - Information (customer tailored for families, doctors, teachers, … - correct, complete available

in own language - Support - Listening/talking - Support for people with disabilities - Financial help to lower costs - Building self-esteem (e.g. developing special skills) - Educational help - Family counselling - Job coaching - Early detection - Raise interest from doctors - Be there – availability without overprotecting - Pre-school testing - Association, peer contact, network - Referral(s) - Planning (forward looking - Don’t minimalise - Communication - Cure ! - Enhance, stimulate research


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Training program – sample home assignments

Home Assignment

Disposition

1. Organizational structure

a. Managerial structure b. Bureaus c. Lay groups

2. Financing the activities of the German NF-association a. Sources side b. Uses side

3. Co-working organization with the German NF-association a. Umbrella organizations (federal/general structure) b. Others

4. Available information material a. Written material b. Web pages

5. Doctors’ list 1. Organizational structure a. Managerial structure

1. Chairman: PD Dr. Victor Felix Mautner / Hamburg 2. Chairman: Frank Wilke / Frankfurt Treasurer: Rainer Swiderski / Hamburg

b. Bureaus I. Hamburg (Headquarter) Von Recklinghausen Gesellschaft e.V.

Klinikum Nord Ochsenzoll Langenhorner Chaussee 560 D-22419 Hamburg Tel. ++49-40-5271-2822 Fax ++49-40-5277462 E-Mail [email protected] Service times: Monday to Thursday 8:30 to 17:00 h Friday: 8:30 to 14:00 h Competence: Placement of the association Welfare centre Cooperation with research and science

II. Frankfurt / Main (Dependance) Von Recklinghausen Gesellschaft e.V. Ohmstraße 62 D-60486 Frankfurt / Main Tel. ++49-69-36402-195 Fax ++49-69-36402-197 E-Mail [email protected] Service times:


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Tuesday/Thursday 10:00 a.m.to 4:00 p.m. Wednesday 10:00 a.m. to 1:00 p.m. Competence: Organization of meetings and seminaries for patients Welfare center Public relation

c. Lay groups In the German NF-association there are organized round about 20 regional lay-groups all over the country. They are seated in: Berlin, Bremen, Chemnitz, Cologne, Dresden, Frankfurt, Freiburg, Gera, Hamburg, Hannover, Karlsruhe, Korbach, Krefeld, Munich, Olpe, Regensburg, Saarbruecken, Stade, Ulm, Wilhelmshaven This list is sorted alphabetically. This assortment of this list does not represent any order of rank. All of these lay groups provide different local activities. Mostly they offer regularly meetings 10 to 12 times a year for patients and relatives. 2. Financing the activities of the German NF-association a. Sources side

a1. The most important financial-source for our self-help-group are the membership-fees. But there are several more ways to get funds: a2. Sponsoring by government (federal and regional ministeries, social-insurances) a3. Sponsoring by private entrepreneurs, fundraising

b. Uses side b1. Administrative costs (rent for the bureaus, personal costs for the co-workers etc.)

b2. Costs for meetings and seminaries for members, potential members and affected people

b3. Costs for public information (information material, internet, public relations) 3. Co-working organization with the German NF-association a. Umbrella organizations (federal/general structure) Together with other patient-organizations the German NF-association is a member of kinds of umbrellaship-organizations, namely called “BAGH” and “Paritätischer”.

The „Bundesarbeitsgemeinschaft Hilfe für Behinderte e.V. (BAGH)“ is an head-organization for several associations for handicapped people and their relatives in Germany. The BAGH requires to realize, handle and arrange the social elements of our democracy, set by the “Grundgesetz” (Basic

Law) in order to the human rights of self-determination, self-agency, normalization and integration. By taking sociopolitical influence on all national levels as well as by clearing-up and informìng the public

the BAGH works toward to realize the legal and practical equalization for all handicapped and/or chronically ill people.

The „Paritätischer“ is a welfare organization of independent member organizations, institutions and groups for charity, which does social work for socially disadvantaged people and as a support for the


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self-help idea. The “Paritätische” wants to be an intermediary between the generations, philosophies, different ways and methods of social work and between its member organizations. It is carried by the idea of parity, that means the equity of humans concerning their reputations and the possibilities and opportunities in the social life, and by the principles of tolerance, openness and variety. The “Paritätische” is committed by the idea of social justice understood as the right of each human to have equal chances to realize their lives in honour and to develop their personalities. The “Paritätische” promotes the social engagements for socially disadvantaged people and to work for their social interests. The “Paritätische” and its member organizations act for them (or for by that threatened people) to speak for their own rights and to intersperse their interests. The “Paritätische” works towards a social policy, which tries to eliminate the causes of social disadvantages and to create a adequate base for a up-to-date social work. b. Others

b1. Social insurances b2. Clearing houses for self-help-groups (for example KISS, NAKOS) b3. Trainers/Coaches in special projects (improving the effectiveness social work of the NF-association, web-page-design, public relation)


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4. Available information material a. Written material

NF1

• general flyer with basis information • brochure “Advisor for adults with neurofibromatosis type I” • brochure “The child with neurofibromatosis type I – an advisor for parents” • brochure “Information about neurofibromatosis and our work – adviser for affected people and

relations” • brochure “We are on the way” – a portrait of the association for neurofibromatosis affected

people • brochure “Neurofibromatosis type I and learning problems” – information for parents and

teachers

NF2

• general flyer with basis information • brochure “Information about NF2” • brochure “Information about NF2 for affected people, relations, therapists and doctors” • brochure “Neurofibromatosis type 2 – technical aid for affected people

• brochure “The German NF-association” – information about the both bureaus, the NF2 group,

and the local lay groups” (NEW – will be printed in 2004) • Poster “Do you know the symptoms of Neurofibromatosis?” – body with remarks on the NF-

symptoms (NEW – will be printed in 2004, poster is transferred from the American NF-association)

b. Web pages 1) http://www.neurofibromatose.de Web page designed by NF1 affected people for NF affected people includes a chat room and a discussion/bulletin board. Here also can be found links to the web pages of some local lay groups. 2) http://www.nf2.de Web page designed by NF2 designed from affected people for NF2 affected people includes a discussion/bulletin board. Further there is an exchanging of information between NF2-patients by a special mailing-list. 3) http://www.von-recklinghausen.org (NEW) Web page of the German NF association that’s designed by professional web-designers to give information especially for doctors and sponsors.


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5. Doctors’ List These doctors are working together with the German NF-association or are recommended by the association. The list is sorted by national post-codes, so this assortment does not represent any order of rank. 1. Dr. Sigrid Tinschert

Medizinische Fakultät Carl-Gustav –Carus-Universität Dresden Institut für klinische Genetik Fetscherstraße 74 D-01307 Dresden Tel: ++49351 / 458 3445 Fax: ++49351 / 458 4316 E-Mail: [email protected] Web: http://www.tu-dresden.de/medgen/ Additional information: Long experience in dealing with NF-affected people

2. Dr. Bernd Algermissen Krankenhaus Neukölln (Berlin) Abt. Laserchirurgie Rudower Straße 48 D-12351 Berlin Tel. ++4930 / 6004 - 3831 Fax: ++4930 / 6004 - 3830 E-Mail: [email protected] Web: http://www.vivantes.de/de/ein/knk/neu/Leistungsangebot/laser/laser.htm Additional information: Qualified treatment/surgery of skin disease

3. Prof. Dr. Dr. Reinhard Friedrich Plastische Chirurgie MKG-Chirurgie des Universitätskrankenhauses Hamburg – Eppendorf Martinistraße 52 D-20246 Hamburg Tel. ++4940 / 42803 - 3251 oder 3259 E-Mail: [email protected] Web: http://www.uke.uni-hamburg.de Additional information: Surgery of skin disease due to NF; plexiform neurofibromas by conventional and laser therapy. Consulting hour in connection with interdisciplinary NF ambulance. Special interest in NF. Consultation hour every Tuesday 14:00 to 17:30 h

4. Dr. Victor-Felix Mautner Klinikum Nord - Ochsenzoll Langenhorner Chaussee 560 D-22419 Hamburg Tel. ++4940 / 5271 - 2822 Fax: ++4940 / 5277462 E-Mail: [email protected] Additional information: NF ambulance, neurologist, psychologist, human genetic counsel, interdisciplinary consulting hour on „Klinikum Nord“


ANNEX 10-4



5. Dr. Cordula Matthies (Neuro-surgeon)

Neurochirurgie im Krankenhaus Nordstadt NF-Ambulanz Haltenhoffstr. 41 D-30167 Hannover Tel. ++49511 / 970 -1250 Fax: ++49511 / 970-1606 E-Mail: Web: http://www.klinikum-hannover.de/nsk/neuchi.htm Additional information: To be contacted in neurosurgical questions

6. Dr. Thorsten Rosenbaum Zentrum für Kinderheilkunde Allgemeine Ambulanz I der Kinderklinik der Heinrich-Heine-Universität Moorenstraße 5 D-40225 Düsseldorf Tel. ++49211 / 811-7696 E-Mail: [email protected] Web: http://www.uniklinik-duesseldorf.de/

7. Dr. Helena Jung Medizinische Genetik Paul-Schallück-Straße 8 D-50939 Köln-Sülz Tel: ++49221 / 9432013-0 Fax: ++49221 / 942013-31

8. Prof. Dr. Peter Gutjahr Universitätskinderklinik Mainz Langenbeckstraße 1 D 55131 Mainz Tel. ++496131 / 17 - 2112 Fax: ++496131 / 17 - 6693 E-Mail:[email protected]. Web: http://www.klinik.uni-mainz.de

9. Prof. Dr. Dr. hc. mult. Wolf Mann Universitätsklinik Mainz Abt. HNO Langenbeckstraße 1 D 55131 Mainz Tel. ++496131 / 17 - 7361 or -2664 Fax: ++496131 / 17 - 6637 E-Mail: [email protected] Web: http://www.klinik.uni-mainz.de/HNO/INDEX.HTM Additional information: Special experience with the ‚Cochlear Implantat’ and gold implantation in the upper eyelid

10 Dr. Marga Lammert Am Stötchen 17 D-59821 Arnsberg Tel. ++492931 / 7 77 47 Additional information: industrial-medicine, no more active in patients contact, special interest in NF; initiating research in NF1-projects

11. OA Dr. Reinhard Keimer Pädiatrisches Zentrum Olga-Hospital Pädiatrie 1, Neuropädiatrie Bismarkstraße 8 D-70176 Stuttgart Tel. ++49711 / 992 - 2720 E-Mail: [email protected]


ANNEX 10-4



Homepage:http://www.olgahospital.de 12. Prof. Dr. Marcos Tatagiba

Ärztlicher Direktor Klinik für Neurochirurgie Universitätsklinikum Tübingen Hoppe-Seyler-Str. 3 D 72076 Tübingen Tel.: ++497071 / 29 8 0325 Fax: ++497071 / 29 5245 Email: [email protected] Homepage: http://www.medizin.uni-tuebingen.de Additional Information: Interdisciplinary consulting hour will be created. Very special interested in neurosurgery in connection with NF1 and NF2

13 Dr. Ute Wahlländer-Danek NF-Ambulanz München Sollnerstraße 11 D-82049 Pullach bei München Tel. ++4989 / 7912507 Fax. ++4989 / 7901269 E-Mail: [email protected] Additional Information: General practitioner with special interested in NF. Very cooperative. Consulting hours: Monday to Friday: 09:00 a.m. - 12:00 and Monday and Wednesday 3:00 p.m. to 6.30 p.m. and on request

14. Dr. Dieter Kaufmann Universität Ulm - Abt. Humangenetik Klinikbereich Oberer Eselsberg Robert-Koch-Straße 8 D-89081 Ulm Tel. ++49731 / 5023419 Fax: ++49731 / 5023427 E-Mail:[email protected] Homepage: http://www.uni-ulm.de/klinik/allg/0201_eselsberg.html Additional Information: NF consulting hour, interdisciplinary ambulance


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Home Assignment

ITALY LINFA

NETWORK ANALYSIS Receving some information from the Associazione LINFA - Lottiamo insieme per la Neurofibromatosi, I’m going to describe it. Its adress is: • mail: Associazione LINFA

c/o Dipartimento di Pediatria - Cattedra di Genetica Via Giustiniani, 3 35128 PADOVA (PD) - ITALY

• fax: “attention to Associazione LINFA” +390498211425

• e-mail: [email protected] or “attention to Associazione LINFA” [email protected]

I’m a member of the Associazione LINFA. Associazione LINFA has a Statute (in Italian, “Statuto”) that settles its life according to the Italian Government lex for Associations and according to its needs. All things considered, the Associazione LINFA has a Board, some members, some no-members and a Medical Board. The Associazione LINFA was founded in 1993 as a voluntary association and it became an ONLUS – (Organizzazione non Lucrativa di Utilità Sociale) in 1999. BOARD (in Italian, “Comitato Direttivo”) The Board is elected by the members of the Associazione LINFA during the annual general meeting and lasts for 2 years. It is re-elected. It has to guide the Associazione LINFA. It is composed by the President, a Secretary, a Treasurer and some Members; at present their names are: • Longo Daniela President • Boscaro Dario Segretary • Rossi Eclio Treasurer • Bacco Severino Member • Martellato Marika Member • Meneguzzi Luigi Member • Menin Maria Tresa Member • Mion Alessandra Member • Wailant Emilio Member MEMBERS (in Italian, “soci”) The members are such since they pay the membership (in Italian, “quota associativa”). They are about 150. NO-MEMBERS (in Italian “simpatizzanti”) The no-members are such because they make donation to the Associazione LINFA. They are about 100. MEMBERS AND NO-MEMBERS The members and no members live all over Italy, but most of them live in the North-East of Italy. They receive Linfanews and all the comunications from the Associazione LINFA. They can take part in general meetings.


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GENERAL MEETING (in Italian, “Assemlea dei soci”) The general meeting is an occasion of meeting for members and no-members. It takes place once a year. Members and no-members can listen to associative and scientific news; they can make questions and proposals. During a general meeting, decisions are taken, but only members have the right to vote. LINFANEWS Linfanews is an informative periodical of the Associazione LINFA. It provides medical and associative information and news. It is sent to members, no-members and Institutions. It is published 3 times a year. VOLUNTARY WORKERS (in Italian, “volontari”) Sometimes, members and no-members take part in activities of the Associazione LINFA, as voluntary workers. These are: • Associazione Arcobaleno • Bacco’s family • Boni Dr. Stefania • Boscaro Dario • Busatto Giorgia • De Stefani’s family • F. Ivana • Longo Daniela • Martellato Marika • Meneguzzi Luigi • Menin Maria Teresa • Mion Alessandra • Pelozzi’s family • Raffagnato’s family • Rossi Eclio • Scout group • Turolla Dr Licia Maria • Wailant Emilio PEOPLE AFFECTED BY NF (in Italian, “persone con NF”) The Associazione LINFA is in touch with people affected by NF or theis families. Members, no-members and people affected by NF can ask information about NF to the Associazione LINFA. MEDICAL BOARD (in Italian, “Comitato Scientifico”) The Medical Board is composed by 4 Doctors. Their names are: • Teconi Prof. Romano President • Boni Dr. Stefania Member • Mammi Dr.Isabella Member • Turolla Dr. Licia Maria Member RESEARCH PLAN (in Italian, “progetto di ricerca”) Since its birth, Associazione LINFA has given his contribution for the research plan about NF. The plans and persons concerned are suggested by the Medical Board. These are young Doctors or Biologists that cooperate with the NF centre in Padova, Via Giustiniani. At present, their names are: • Di Monia Maria Letizia Biologist • Marzocchi Dr Cinzia Doctor


ANNEX 10-4



CONTACT PEOPLE (in Italian “contatti”) The Associazione LINFA adheres to the NF-Europe and is in touch with ANF (the other NF Association in Italy). It takes part in National meetings for Rare Deseases Associations (in Italian, Associazioni Malattie Rare): • Coordinamento Nazionale Associazioni malati cronici - Roma • Associazione Giuseppe Dossetti, i Valori - Roma It is in touch even with State Institutions: • Istituto Superiore della Sanità Roma • Ministero della Sanità Roma • Associazioni Azienda Ospedaliera Padova • Centro Servizi per il Volontariato Padova It is registred in the Voluntary Register in: • Comune di Padova, • Provincia di Padova, • Regione Veneto NF CENTER (in Italian “centri NF”) Associazione LINFA is in touch with the NF center in Padova, where it has its headquarters and with NF doctor’s offices where the members of the medical board work. Their adresses are: • NF Center - Prof. Romano Tenconi, Dipartimento di Pediatria, Cattedra di Genetica - Via

Giustiniani, 3 - 35128 Padova • NF doctor’s office - Dr. Boni Stefania, Servizio di Genetica c/o Pediatria Ospedale San Martino -

Viale Europa 32100 Belluno • NF doctor’s office - Dr. Mammi Isabella, Ospedale Dolo - Venezia • NF doctor’s office - Dr. Licia Maria Turolla, Ambulatorio Genetica ULSS 9 - Via Biscaro 31100

Treviso Then, the Associazione LINFA has a list of NF centres all over Italy. They are: NEUROFIBROMATOSIS TIPE 1 Prof. Orazio Gabrielli Dottor Leone Fera Clinica Pediatrica Università degli Studi Divisione di Neurologia I Ospedale Salesi Ospedali Riuniti Via Corridoni, 11 - 60123 ANCONA Largo Barozzi, 1 - 24128 BERGAMO Dottor Roberto Micheli Dottor Mario Loi Osp. Civili Div. Neuropsichiatria Infantile Servizio Di Neuropsichiatria Infantile Piazzale Ospedali Civili, 1 - 25125 BRESCIA Ospedale Brotzu Via Peretti - 01934 CAGLIARI Prof. Lorenzo Pavone/Dottor Martino Ruggieri Prof Pietro Strisciuglio Università degli Studi Dipartimento di Pediatria Cattedra Pediatria Ospedale Pugliese Via S. Sofia, 78 - 95125 CATANIA Viale Pio X - 88100 CATANZARO Prof.ssa Rossana Pallotta Prof. Eugenio Bonioli Cattedra di Pediatria Preventiva e Sociale Clinica Pediatrica II Servizio Regionale Per la Diagnosi Prevenzione Ospedale G. Gaslini e Cura dei Difetti Congeniti del Bambino Larbo g. Gaslini, 5 - 16147 GENOVA Via Dei Vestini - 66013 CHIETI Prof.Paolo Paolucci/Dott.ssa Mariangela Rubino Prof.ssa Giuliana Lama Divisione Pediatrica Casa Sollievo Sofferenza Clinica Pediatrica II Università Studi Viale dei Cappuccini Via S. Andrea delle Dame, 4 71013 S. GIOVANNI ROTONDO (Foggia) 80138 NAPOLI


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Prof.ssa Livia Rossi Dott. Angelo Selicorni Clinica Pediatrica De Marchi Neurologia Ambulatorio Sindromologia e Via Commenda, 9 - 20122 MILANO Genetica Clinica Pediatrica De Marchi Via Commenda 9 - 20122 MILANO Prof. Sergio Bernasconi/Dott.ssa Azzurra Guerra Prof. Giovanni Corsello Clinica Pediatrica Policlinico Istituto Materno Infantile Università Studi Via Del Pozzo, 71 - 41100 MODENA Via Card. Rampolla,1 - 90142 PALERMO Prof. Mauro Savi Prof. Raffaele Virdis Genetica Medica Università degli Studi Clinica Pediatrica Università degli Studi Viale Gramsci, 14 - 43100 PARMA Via Gramsci, 14 - 43100 PARMA Dott.ssa Giovanna Tripodi Dott.ssa Livia Garavelli Divisione Pediatria Ospedale Bianchi Div. Pediatria Arcispedale S.Maria Nuova Via Melacrino - 89100 REGGIO CALABRIA Via Risorgimento, 80-42100 REGGIO EMILIA Dott. Aldo Giannotti Dott.ssa Rossella Vivarelli Servizio Genetica Medica Clinica Pediatrica Ospedale Bambin Gesù Policlinico Senese Le Scotte Salita S. Onofrio, 4 - 00165 ROMA Viale Bracci, 16 - 53100 SIENA Dott.ssa Silvia Vannelli Clinica Pediatrica Auxologia - Ospedale Infantile Regina Margherita - Università degli Studi Piazza Polonia, 94 - 10126 TORINO NEUROFIBROMATOSIS TIPE 2: Prof. Vincenzo Albanese Dott. Martino Riuggieri Divisione Clinicizzata Di Neurochirurgia IBFSNC - CNR Università degli Studi Azienda Ospedaliera Garibaldi Piazza Roma 2 - 95123 CATANIA Piazza S. Maria del Gesù - 95124 CATANIA Prof. Alessandro Martini Dott.ssa Laura Papi Audiologia Arcispedale S. Anna Università degli Studi Dipartimento di Via Corso della Giovenca, 203 Fisiopatologia Clinica 44100 FERRARA Viale Morgagni, 85 - 50134 FIRENZE Prof. Angelo Gandolfi - Otoneurochirurgia - Ospedale Maggiore Viale Gramsci, 14 - 43100 PARMA Finnaly, there are some doctors that know NF and are specilistic in some branches; they work in Padova. Their names are: • Basile Dr. Teresa – NF head pediatrician surgery, c/o Azienda Ospedaliera - Via Giustiniani

35100 Padova • Clementi Prof. Maurizio - genetic, c/o Azienda Ospedaliera - Via Giustiniani 35100 Padova • Carollo Dr. Carla - neuroradiologist, c/o Azienda Ospedaliera - Via Giustiniani 35100 Padova • Jacopetti Dr Tiziano - plastic surgeon, c/o Azienda Ospedaliera - Via Giustiniani 35100 Padova • Laverda Prof. Annamaria - neurology pediatrician, c/o Azienda Ospedaliera - Via Giustiniani

35100 Padova • Monciotti Prof. Carla - pediatrician, c/o Azienda Ospedaliera - Via Giustinini 35100 Padova • Perilongo Dr Giorgio - oncohaematologist pediatrician, c/o Azienda Ospedaliera - Via Giustiniani

35100 Padova • Rossetti Dr. Alberto - oculist, c/o Azienda Ospedaliera - Via Giustiniani 35100 Padova


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• Trevisan Prof. Carlo - neurology, c/o Clinica Neurologica 2° Ospedale Sant’Antonio - Via Facciolati 35100 Padova

ACTIVITES (in Italian, “attività”) Associazione LINFA gives information about NF, organizes a meeting once a year, it publishes a periodic and a little book. For young people affected by NF, it organizes a specific project in order to help them to know NF and other boys and girl with the same problem. This year the Associazione LINFA has sent to all Pediatricians in Veneto some information about NF to enable them give information (“Le Neurofibromatosi” by Prof. Romano Tenconi and Dr. Martino Ruggieri - published by the Associazione LINFA) about this genetic disorder. According to the Italian privacy act (N. 675/96), I left out private addresses.

This report was produced by a contractor for Health & Consumer Protection Directorate General and represents the views of the contractor or author. These views have not been adopted or in any way approved by the Commission and do not necessarily represent the view of the Commission or the Directorate General for Health and Consumer Protection. The European Commission does not guarantee the accuracy of the data included in this study, nor does it accept responsibility for any use made thereof.

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