austria
Austria
belgium
Belgium
denmark
Denmark
Finland
Finland
France
France
Germany
Germany
Netherlands
Netherlands
Norway
Norway
Slovakia
Slovakia
Spain
Spain
Sweden
Sweden
Switzerland
Switzerland

Members

austria
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 (wl.)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:
Lauriane Janssen – l.janssen@marfan.be

Belgium (fl.)

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

denmark

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

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

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

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:
Susanne London-Tinner – s.london-tinner@marfan.de
kontakt@marfan.de

Netherlands

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

Norway

Norway

Name:
Marfanforeningen

Size:
To be Added

Purpose:

  • To be Added
  • To be Added
  • To be Added

Organisation:
To be Added Board is meeting every To be Added .

Contacts:
Ann-Elisabeth – annelisabeth@marfan.no
Charlotte – charlotte@marfan.no

Slovakia

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:
marfan.sk@mail.t-com.sk

Spain

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

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:
Karin Olsson – karinolsson@me.com
Carina Olsson – carina.olsson@telia.com

Switzerland

Switzerland

Name:
Marfan Stiftung Schweiz

Size:
1500 Marfan members

Purpose:

  • To be Added
  • To be Added
  • To be Added

Organisation:
To be Added Board is meeting every To be Added .

Contacts:
Giancarlo Bombardieri – info@marfan.ch