Austria
Name:
Marfan Initiative Österreich
Size:
80 members, both families and individual memberships.
Purpose:
- Information and exchange of experiences of and with members and persons who are affected with Marfan
- Networking with organisation for rare diseases in Austria and Europe
- Public relations and raising awareness
Organisation:
A board with a chairman and additional 5 board members who each have Marfan Syndrome or are closely related.Board is meeting montly.
Contacts:
info@marfan-initiative.at
Belgium Flanders
Name:
Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen – Bindweefsel.be
Size:
195 families
Purpose:
- Provide information and organize awareness campaigns about the disorders to patients, medical and scientific world, authorities, general public
- Promoting social integration for people with connective tissue disorders by contributing to initiatives that may have an impact on government policy
- Networking, cooperate, thinking, innovative initiatives to promote the welfare of our members
- Provide new information and announce activities via the website and newsletters
Organisation:
A board with a chairman and additional 2 board members with Marfan Syndrome and 4 other board members. Board is meeting every 2 month.
Contacts:
info@bindweefsel.be
charissa.frank@bindweefsel.be
joris.aerts@bindweefsel.be
Belgium Wallonia
Name:
Association Belge du Syndrome de Marfan
Size:
100 families
Purpose:
- Raise awareness for Marfan Syndrome and provide information to patients and healthcare professionals
- Create local helpgroups and moral support to patients when needed
- Fund the medical research for Marfan Syndrome for 5000-10 000 euro each year
Organisation:
A board with a chairman and additional 4 to 8 board members who each have Marfan Syndrome or are family members.
Board is meeting every 3 months.
Contacts:
Douchka Peyra – d.peyra@marfan.be
Denmark
Name:
Landsforeningen for Marfan Syndrom
Size:
396 members, both families and individual memberships. 167 has the diagnosis.
Purpose:
- For individuals with Marfan syndrome, but also for relatives, professionals and other interested parties.
- Raising awareness in order for affected people to receive the best possible treatment.
Organisation:
A board with a chairman and additional 6 board members who each have Marfan Syndrome or is closely related. Board is meeting every 3 months.
Contacts:
Martin J. Skov – martin@marfan.dk
Finland
Name:
Suomen Marfan Yhdistys
Size:
190 members, mainly with Marfan syndrome or family members.
Purpose:
- Share information about Marfan Syndrome and related diseases with the members of the association and healthcare specialists.
- Act as a link between Marfan/related patients and their families
- Keep track of benefits available for Marfan/related patients and their families
- Develop the treatment, rehabilitation and adaptative training for Marfan/related patients and their families
Organisation:
A board with a chairman and additional 4 +4 board members who each have Marfan Syndrome or are family members. Board is meeting 6-8 times per year.
Contacts:
Jessica Lindgren – marfanyhdistys@gmail.com
France
Name:
Asso Marfans
Size:
About 400 families, around 1000 diagnosed patients
Purpose:
- Raise awareness on Marfan syndrome and related disorders
- Help and support Marfan families, among other by sharing what are their rights, to which benefits they are entitled and ho
- Help to finance Marfan and related research
- Networking with various associations at national and international level (MEN, Marfan World, VASCERN, Eurordis, …)
Organisation:
A chair with 7 board members + 9 administrators, who have Marfan syndrome or are familly members. 4-5 phone meetings per year, 3 board meetings and the one general assembly meeting.
Contacts:
contact@assomarfans.fr
Germany
Name:
Marfan Hilfe (Deutschland) e.V.
Size:
1.260 members incl. about 640 directly affected by Marfan syndrome or related diseases
Purpose:
- Accompany and support people who are directly or indirectly affected by Marfan syndrome or related diseases.
- Provide information to members and organise platforms for exchange with peers and experts.
- Promote and follow scientific research (surveys, studies, publications) to improve diagnosis and treatment.
- Spread information to increase the awareness for Marfan syndrome among patients, doctors, health authorities and in the general public.
Organisation:
A statutory board of 4 members, assisted by an advisory board of 7 members and a scientific advisory board of 23 medical experts. Board meetings are held twice a year (telephone conferences in the interim time).
Contacts:
k.zeyer@marfan.de
Luxembourg
Name:
den i asbl
Size:
25 members, families and individual memberships
Purpose:
- Support the people concerned
- Inform about the Marfan Syndrome
- Raise awareness among the general public
- Developing contacts with other associations (national and international)
- Supporting scientific and medical research and bringing together the different actors (persons concerned, science, medicine, etc.).
Organisation:
A board with a chairman and 3 to 7 additional members. Board is meeting every 2 months.
Contacts:
info@marfan.lu
Netherlands
Name:
Contactgroep Marfan Nederland
Size:
386 families
Purpose:
- Information and education
- Representation of interests
- Contact between fellow sufferers/patients and their family
Organisation:
A board with 1 chair and 5 board members, with board meeting every 6 weeks, for a total of 8 meetings/year.
Contacts:
contact@marfansyndroom.nl
Slovakia
Name:
Asociácia Marfan Syndróm
Size:
approx 150 members, both families and individual memberships.
Purpose:
- Support people with Marfan syndrome and their relatives. individual assistance for patients to get treatment and get contacts with doctors / specialists
- Information and education: Spread information to increase the awareness for Marfan syndrome among patients, doctors, health authorities and in the general public
- Act as a link between Marfan/related patients and their families
Organisation:
A board with a chairman and additional 5 board members. Board is meeting twice a year in person, more often by phone.
Contacts:
info@marfan.sk
lukovicova@marfan.sk
Spain
Name:
SIMA, the Spanish Marfan Syndrome
Size:
190 family members
Purpose:
- Give information,advising and help to everybody who asks for it
- Help with getting the best quality of life of every people affected
- Celebrate one meeting a year to share information and experiences
Organisation:
The elected board has 4 positions, President, Vicepresidente, Secretary and Treasurer, all of them patientes or relatives, volunteers. They meet once a month using Skype.
Contacts:
secretaria@marfan.es
Sweden
Name:
Svenska Marfanföreningen
Size:
172 members with Marfan and 126 family members
Purpose:
- Support people with Marfan syndrome and their relatives.
- Provide knowledge on and promote research concerning the syndrome
- Keep in touch with similar associations in Sweden and in other countries.
Organisation:
A board with a chairman and additional 8 to 10 board members. Board is meeting twice a year in person, more often by phone.
Contacts:
marfan.sverige@gmail.com
