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.

VASCERN ePAG has:

  • 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

Claudia CROCIONE

HHT Europe
Associazione Italiana Teleangectasia Emorragica – HHT ONLUS

italie

ePAG Deputy Co-Chair

Other ePAG Patient Advocates

Ria BLOM

Harteraad

   

NL

Caroline COXALL

HHT UK

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Karen TOPAZ DRUCKMAN

HHT Swiss

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Torben HELLEGAARD

Osler/HHT Danmark

 

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Mildred LUNDGREN 

HHT Sverige

su

Dara WOODS

HHT Ireland

 

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Tone SODERMAN

HHT Olser.no

norvege

Other ePAG Patient Organisations

Other HHT Patient Organisations

CanadaHHT Canada THH
US: Cure HHT

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 later enlarge to include other disorders (e.g. fibromuscular dysplasia).

Juergen Grunert, ePAG Co-chair for MSA is member of the MSA-WG. He is equally Chair of the VASCERN ePAG group.

ePAG Co-Chair

ePAG Deputy Co-Chair

Charissa FRANK

bindweefsel.be

 

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Other ePAG patient organisations

FMD-Be (FMD Belgium)

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Shg Ehlers-Danlos-Syndrom

CaptureAustria

Other MSA Patient Organisations

Italy: AISED Ehlers-Danlos
UK/US: The Ehlers-Danlos Society

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.

ePAG Co-Chair

ePAG Deputy Co-Chair

Other ePAG Patient Advocates

Other ePAG Patient Organisations

Other PPL Patient Organisations

France: AVML
UK: British Lymphology SocietyLymphoedema Support Framework

 

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

  • 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.

Plus:

  • 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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