VASCERN Patient Group (ePAG)


Patient empowerment is important in order to collect the most pertinent information and to allow patients to take part in making the management of their disease evolve in the most efficient manner.

The VASCERN Patient Group (ePAG, European Patient Advocacy Group) gathers Patient Representatives and Patient Organisations in Rare Multisystemic Vascular Diseases. It is one of the 24 ePAGs supported by EURORDIS and linked to the 24 European Reference Networks on rare diseases.


  • 1 ePAG Chair
  • 5 ePAG Co-chairs, who
    • make the link with the other ePAG Representatives and ePAG Member,
    • Participate in the corresponding RDWG monthly virtual meetings and activities (one per Rare Diseases Working Groups – RDWG)
    • and participate in the monthly ePAG virtual meetings.                                                                                                                                     
  • ePAG Representatives, involved in the ePAG monthly virtual meetings and activities
  • Other ePAG Members (Patient Organisations).

The ePAG enables Patient representatives to work together on common issues and deliverables, as well as to be involved in all VASCERN activities.

Hereditary Haemorrhagic Telangiectasia (HHT)

HHT Patient Associations are also members of HHT Europe and EURORDIS.

Claudia CROCIONE, ePAG Co-chair for HHT, is member of the HTT-WG.

ePAG Co-Chair


HHT Europe
Associazione Italiana Teleangectasia Emorragica – HHT ONLUS


ePAG Deputy Co-Chair

Other ePAG Patient Advocates

Caroline COXALL




HHT Swiss

Capture Swiss


Osler/HHT Danmark







HHT Sverige


Other HHT Patient Organisations

CanadaHHT Canada THH
US: Cure HHT

Heritable Thoracic Aortic Diseases (HTAD)

HTAD Patient Associations are also members of EURORDIS and Marfan Europe Network.

Lise Murphy, ePAG Co-chair for HTAD is member of the HTAD-WG

ePAG Co-Chair

ePAG Deputy Co-Chair


Magica was founded in 2006 by a 33 y.o. patient of CMGCV, Matteo, affected by Marfan Syndrome. After a check-up, while speaking with the director of the center Eloisa Arbustini, he had the idea to create an entity to sustain the families followed by the Center who suffered inherited cardiovascular diseases like him.

Magica’s main objectives are:

– To guarantee continuity of care over time both in terms of supporting the continuity of the clinical activity of the center and in terms of helping patients to sustain costs for clinical check-ups.
– To provide correct information on these disease to patients and to general practitioners.
– To promote solidarity both among patients and other charities creating charity networks.
– To foster the development of research on heritable cardiovascular diseases through voluntary donations.

Put your heart into the play with us

Maria Carla FAVINI
AssoMarfan, Italy



Association Belge du Syndrome de Marfan (ABSM), Belgique

Medium Sized Arteries (MSA)

MSA Patient Associations are also members of EURORDIS.

Vascular Ehlers Danlos Syndrome is the main disease included within the scope of the MSA-WG. The scope will include afterwards other disorders, namely: Kawasaki Disease, Coronary Arterial dissections (spontaneous), Fibromuscular dysplasia.


Ehlers-Danlos-Initiative e.V., Germany

The Society was founded in 1996 by a couple of parents and concerned people. Today we have more than 300 Families and Individuals as Members. We have a medical-Scientific committee, a strong group for adolescents and young adults and are represented nearly all over Germany. The main goals of our work are:

  • Rising awareness for the disease in the public, at medical professionals and researschers
  • Assisting EDS patients finding diagnosis and support/assistance/treatment
  • Supporting studies
  • Connecting with international patient organisations

All work is done by volunteers, no full-time employees.

Other MSA Patient Organisations

Denmark: Ehlers-Danlos foreningen
France: AFSED
Germany: Ehlers-Danlos-Selbsthilfe e.V.
Italy: AISED Ehlers-Danlos
Spain: ASEDH
Sweden: Ehlers-Danlos syndrom Riksförbund

Pediatric and Primary Lymphedema (PPL)

PPL Patient Associations are linked to the International Lymphoedema Framework (ILF).

Pernille Henriksen, ePAG Co-chair for PPL, is also member of the PPL-WG.


Danish patient organisation for lymphedema (DALYFO)

Established in 1992, DALYFO is a Danish association representing patients with primary and secondary lymphoedema. We have strong ties and collaborations with the other Nordic patient associations for lymphoedema and the Danish Lymphoedema Framework.

Deputy Co-chair

ANDLymph/ National Association of Sufferers of Lymphatic Disorders

ANDLymph/ National Association of Sufferers of Lymphatic Disorders  improves throughout Portugal knowledge of lymphatic disorders and related illnesses. The several actions that the Association intends to develop are intended to make available to sufferers and their families a multi-disciplinary network of support and quality care within an economically responsible framework, as well as developing synergies which encourage greater visibility and acceptance of lymphatic disorders in society and the community and are aimed at improving quality of life.

We are currently looking for other European PPL Patient Organisations Representatives, who would be involved in the VASCERN ePAG. 

Other PPL Patient Organisations

France: AVML
UK: British Lymphology SocietyLymphoedema Support Framework
Belgium: BeLymph
Netherlands: Dutch Lymphedema & Lipoedema Network (NLNet)


Vascular Anomalies (VASCA)

VASCA Patient Associations are also members of EURORDIS.

Caroline VAN DEN BOSCH, ePAG Co-chair for VASCA is also member of the VASCA-WG.


HEVAS, Netherlands
· Our medical advisors can be found here
· The specialised doctors working in our field can be found here

· The patient organisations HEVAS is working with in our national and/or European networks can be found here
amongst others:
– SKTN Stichting Klippel-Trénaunay Nederland (Klippel-Trenaunay the Netherlands)
– Nv WSWs Nederlandse vereniging voor mensen met een Wijnvlek of Sturge-Weber syndroom (Portwine stain and/or Sturge-Weber Syndrome)
· Other relevant organisations HEVAS is associated with:
– HEVAS is working together with VSOP since 2012. VSOP is the Dutch representative of 66 patient organisations of rare diseases and member of EURORDIS
– HEVAS is member of ISSVA: The International Society for the Study of Vascular Anomalies. The term anomalies encompasses hemangiomas and vascular malformations.
Substitute Co-chair

Maria Barea & Franziska Haiml
VASCAPA, Belgium

VASCAPA was founded on 5th May 2012 in Brussels, under the leadership of Prof. Boon and Prof. Vikkula.

The purpose of our association is :

  • to disseminate maximum information regarding vascular anomalies (tumour or malformation) to the general public
  • to refer people suffering from these diseases to specialized centres
  • to put in contact with patients willing to share their daily difficulties with others facing similar situations
  • to guide patients in their administrative procedures
  • to ensure readiness to listen, encourage, share
  • to create supports, information tools
  • to make known these rare diseases to health professionals
  • to stimulate research and reduce ignorance
  • to improve medical care
  • to ensure patients care even outside of Belgian and European borders

Our tools :

  • website : click here
  • email address : click here
  • informative folders
  • newsletter
  • individual support when visiting Prof. Boon

Petra BORGARDS & Elisabeth HUHN
Federal Association of Congentinal Vasuclar Malformations, Germany

FACAM is an association of patients, relatives, friends and physicians, who engage for better living conditions of patients suffering from vascular anomalies and her families. FACAM designs information opportunities that facilitate the everyday life with the disease in addition to medical care by specialists:
– Regular meetings of patients, physicians and interested people, where information and experiences can be exchanged and common leisure events were offered.
– Advice by telephone, mail, post deployment experiences, helpful addresses or contacts.
– Publishing a “magazine”, website and newsletter.

Fondazione Alessandra Bisceglia W ALE Onlus, Italy

I’m the President of the Alessandra Bisceglia’ Foundation whose aim is the study and treatment of vascular anomalies. We have two centres, “Stanze di Ale”, where we carry out free medical advice about vascular anomalies, we have several projects of assistance to families and patients (helpline, psychological support) and we fund research too. We believe in networking.

Other VASCA Patient Organisations

Finland: Suomen Klippel-Trenaunay ry

  • Governance: Patients are represented in VASCern governance as well as in the Patient-WG, which is expected to participate actively and give patients and families views. WG Members represent Patient Organisations and will mainstream information in order to maximise the interactions between the ERN and patient associations.
  • The Patient-WG will implement its own road map as there are common issues to be tackled and shared; inform the Board and Council of difficulties they see and be involved in Ethical issues, to balance patient and clinical needs appropriately.
  • Care: Promote, encourage a patient-centric approach in clinical care, service improvement, strategic development, decision-making, ensure the need of rare disease patients are considered and included in discussions and activities, Contribute to the development and dissemination of information to patients, from policy to good practices, care pathways and guidelines.
  • Research: Contribute to define research priority based on what is important to patients and families, ensure patients are embedded in the research activities, assessment of clinical trials and ethics committees, contribute to dissemination of research activities and outcomes, especially to patients
  • Evaluation: Ensure feedback, evaluation based on patient experience, reviewing the ERN performance by receiving and reviewing quality indicators, access times to diagnostic and treatment, clinical outcomes, evaluation of how the ERN acts based on these feedbacks, through the ePAG, Patient-WG, patient experience surveys, in order to redefine and prioritise ERN activities. To give as much information as possible to patients, a social forum should be established on the website. Patients should be aware of what should/should not be done for appropriate diagnosis and care.
  • As Expert patients, they are best placed to educate patients and families on the management of their diseases. They can identify and recommend expert centres or other HCPs.

Patient Involvement in the VASCERN ePAG

The European Patient Advocacy Group (ePAG) of VASCERN has been very active in participating in the various projects of the 5 Rare Disease Working Groups as well as spearheading projects that empower and inform rare vascular disease patients and their families.

Notable outputs to date from the VASCERN ePAG include:

  • Poster entitled Patient Involvement on Vascular Anomalies in the European Reference Network VASCERN presented the 2018 European Conference on Rare Diseases and Orphan products in Vienna, Austria. See the poster here.
  • “3 a week campaign”, launched by the patient advocates of the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG) that aims to inspire people with Marfan syndrome and related HTAD to participate in a suitable form of physical activity for 30 minutes, 3 times a week. See Facebook page of the campaign here
  • Pill of Knowledge (PoK) video on the unmet medical needs in vascular Ehlers-Danlos Syndrome (vEDS), from a patient’s perspective, featuring the ePAG co-chair and ePAG Deputy Co-Chair for the Medium Sized Arteries Working Group (MSA-WG). See the video here.
  • PoK video entitled Overview of Pediatric and Primary Lymphedema, by former ePAG Co-Chair for the Pediatric and Primary Lymphedema Working Group. See the video here
  • Translation of Bakoumba, the children’s book on Marfans syndrome, thanks to the help of the HTAD Patient Organisations. The book can now be ordered in various European languages.


  • The important contribution of the HHT ePAG in the revision of the Orphanet summary on HHT. See the updated summary here
  • More than 40 Patient Organisations of our ePAG are included in the VASCERN app, which necessitates an important work of coordination from the ePAG co-chairs.
  • Providing invaluable assistance in the translation of subtitles for our various PoKs
  • Revision of the VASCERN ePAG Terms of Reference document by the group
  • Participation in the review of the VASCERN Do’s and Dont’s factsheets and patient pathways
  • Romain Alderweireldt, ePAG member for HTAD WG, is equally chair of VASCERN’s Ethical & Legal issues working group, Co-Founder of the 101 Genomes Foundation and represents VASCERN in the interERN WG on Legal and Ethical issues.

Coming soon!

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