Marfan Initiative Österreich
Network
Patient Organisations
VASCERN works closely with patient organisations across Europe to ensure that the voices of those affected by rare vascular diseases are heard. These organisations play a key role in advocating for patient needs, providing support, and raising awareness about rare diseases. The map below highlights patient organisations that are part of the VASCERN network, showing their locations and offering contact information to help patients and families connect with vital support services.
Explore the Map
Use the interactive map below to locate patient organisations across Europe. By clicking on the markers, you can find more information about each organisation.
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Shg Ehlers-Danlos-Syndrom
Association Belge du Syndrome de Marfan (ABSM)
Bindweefsel.be
Gesed – Groupe D’Entraide S.E.D.
Българска асоциация Лимфедем
AVMinority, z.s.
Ehlers-Danlos foreningen i Danmark
Landsforeningen for Marfan Syndrom
Krabbameinsfelagið (KMF)
Harvinaisten sairauksien ja vammojen potilasyhdistysten organisaatio HARSO ry
Suomen Ehlers-Danlos -yhdistys ry
Suomen lymfayhdistys
Suomen Marfan – Marfan Syndrome Finland
Suomen Reumaliitto – Finnish Rheumatism Association
Agir Pour La Malformation Lymphatique En Alliance
Amro HHT France
Association CADASIL France
Association Française des Syndromes d’Ehlers Danlos (AFSED)
Association Ollier-Maffucci Europe
Association Sturge-Weber France
Association Vivre Mieux le Lymphoedème (AVML)
AssoSED1+
Lymphoedème Family
Union Nationale Des Syndromes D’Ehlers-Danlos
Angeborene-Bindegewebs-Erkrankungen e.V.
Bundesverband Angeborene Gefäßfehlbildungen e.V. (Federal Association of Congenital Vascular Malformation)
Interessengemeinschaft Sturge-Weber-Syndrom e.V.
KIF11 Kids
Marfan Hilfe
Morbus Osler Selbsthilfe e.V
AISED ONLUS – Associazone Italiana Sindrome Ehlers-Danlos
Associazione Fondazione Italiana HHT Onilde Carini
Associazione Italiana Per La Lotta Alla Sindrome Di Marfan E Patologie Correlate
Associazione Vittorio per la Sindrome di Marfan e malattie correlate
CEDI Onlus Italia
Fondazione Alessandra Bisceglia ViVa Ale
HHT Europe
HHT Italia aps
Lega Italiana Lotta al Linfedema Aps (LILL)
Lymphido O.D.V
Grace Nolan Foundation
HHT Ireland
LGD Alliance Europe (LGDA)
Marfan Syndrome Support Group – Ireland
Den I Asbl Syndrome De Marfan
CMTC-OVM
Contactgroep Marfan Nederland
FMD Groep Nederland
ROW/HHT Nederland
HEVAS
Nederlands Netwerk voor Lymfoedeem en Lipoedeem (NLNet)
Nederlandse vereniging van mensen met een Wijnvlek of Sturge-Weber syndroom (Nv WSWs)
Vereniging van Ehlers-Danlos patiënten (VED)
HHT Osler foreningen Norge
Norsk Forening For Ehlers-Danlos Syndrom
Norsk lymfødem- og lipødemforbund (NLLF)
Associação Nacional de Doentes Linfáticos (andLINFA)
Marfan Polska (Polish Marfan Association)
Slovak Marfan Association
ANSEDH – Spanish National Patient Organization for Ehlers-Danlos
Asociacion Española de Afectados por el Sindrome de Marfan (SIMA)
Asociación Española de Cavernomas
Asociaciòn HHT Espana
Aorta Dissektion Föreningen Skandinavien
HHT Sverige
Svenska Marfanföreningen
Svenska Ödemförbundet (SÖF)
Swedish Eds Association (EDS Riksförbund)
HHT Swiss
Marfan Stiftung Schweiz
Annabelle’s Challenge
Ehlers-Danlos Support Group
The Ehlers-Danlos Society