austria
Austria
Belgium (fl.)
Belgium(fl.)
Belgium (wl.)
Belgium(wl.)
denmark
Denmark
Finland
Finland
France
France
Germany
Germany
Luxembourg
Luxembourg
Netherlands
Netherlands
Norway
Norway
Slovakia
Slovakia
Spain
Spain
Sweden
Sweden
Switzerland
Switzerland
United Kingdom
UK

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 (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

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

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

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

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

United Kingdom

United Kingdom

Name:
Marfan Trust

Size:
5000 members (nationally)

Purpose:

  • Research into cause and management
  • Support of patients and families
  • Education and awareness in general population

Organisation:

Board is composed of a chairman and seven Trustees all of whom have Marfan syndrome or a family member with Marfan syndrome. Board meets every 3 months.

Contacts:
Anne Child – achild@sgul.ac.uk
marfantrust@sgul.ac.uk