vEDSis
  • Forsíða
  • Hvað er vEDS?
    • Einkenni vEDS
    • Hvað veldur vEDS
    • Að lifa með vEDS
  • Um samtökin
    • Fundargerðir
  • Fróðleikur
    • Aðrar vefsíður um vEDS
    • Af hverju er Zebra tákn EDS?
    • Greinar
    • Myndbönd
    • Rafræn tímarit
    • Áhugavert efni
  • Greiningarferli
  • Celiprolol og vascular EDS
  • Heilbrigðisstarfsfólk

Hér má finna fræðsluefni fyrir heilbrigðisstarfsfólk
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  • Samantekt fyrir heilbrigðisstarfsfólk
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  • ​Vascern Do's and Dont's factsheet for rare vascular disease patients facing frequent situations
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  • ​Effect of celiprolol on prevention of cardiovascular events in vascular Ehlers-Danlos syndrome

  • ​​Heimasíða Vascern - The MSA Working Group, is built upon Multidisciplinary Centres of Excellence that are collaborating. The MSA-WG scope includes mainly Vascular Ehlers Danlos Syndrome. 
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​Hér má finna myndbönd sem tekin voru face-to-face fyrir Medium-Sized Arteries Working Group (MSA WG) og Vascular Ehlers-Danlos heilkenni (vEDS) fundi í London 1. júlí 2019 með stuðningi frá The Ehlers-Danlos society í UK.  Erindið er flutt af Dr. Fransiska Mal.​
​Vascular Ehlers-Danlos syndrome: Introduction and new criteria by Dr. Fransiska Malfait, clinical geneticist, Center of Medical Genetics, Ghent University Hospital, Ghent, Belgium.
​Structure of the Medium-Sized Arteries Working Group (MSA WG) in VASCERN by Dr. Leema Robert, consultant clinical geneticist, Guys and St. Thomas Hospital , London, UK.
Genetics of vascular Ehlers-Danlos syndrome (vEDS) : Part 1 - Pathogenic variants in COL3A1 by Dr.Ingrid van de laar, Clinical geneticist, Erasmus Medical Center, Rotterdam, The Netherlands.
Genetics of vascular Ehlers-Danlos syndrome (vEDS): Part 2 - Pathogenic variants in COL3A1: dominant negative effect by Dr. Ingrid van de Laar, Clinical geneticist, Erasmus Medical Center, Rotterdam, The Netherlands.
Genetics of vascular Ehlers-Danlos syndrome (vEDS): Part 3 - Pathogenic variants in COL3A1 : haplo-insufficiency by Dr. Ingrid van de Laar, Clinical geneticist, Erasmus Medical Center, Rotterdam, The Netherlands.
Clinical Features and Diagnostic criteria of vascular Ehlers-Danlos syndrome (vEDS) - Part 1 by Dr. Michael Frank, Cardiologist, Rare Vascular Disease Reference Centre, Assistance Publique-Hôpitaux de Paris, Hôpital Européen, Georges Pompidou (HEGP), Paris, France. ​
Natural history and complications of vascular EDS – Part 2 by Dr. Michael Frank, Cardiologist, Rare Vascular Disease Reference Centre, Assistance Publique-Hôpitaux de Paris, Hôpital Européen, Georges Pompidou (HEGP), Paris, France. ​
Monitoring and Management of vascular Ehlers-Danlos syndrome (vEDS) - Part 3 by Dr. Michael Frank, Cardiologist, Rare Vascular Disease Reference Centre, Assistance Publique-Hôpitaux de Paris, Hôpital Européen, Georges Pompidou (HEGP), Paris, France. ​
Pregnancy in vascular Ehlers-Danlos syndrome (vEDS) – Part 1 by by Dr. Leema Robert, consultant clinical geneticist, Guys and St. Thomas Hospital , London, UK.
Pregnancy in vascular Ehlers-Danlos syndrome (vEDS) – Part 2 - Is In Vitro Fertilisation (IVF) safe in vEDS patients? by Dr. Leema Robert, consultant clinical geneticist, Guys and St. Thomas Hospital , London, UK.
Arterial fragility in other types of Ehlers Danlos Syndrome: Part 1 - Introduction, Classical Ehlers-Danlos Syndrome (EDS) by Dr. Neeti Ghali (consultant clinical geneticist and cooperating guest from the EDS National Diagnostic Services in London, UK).
Arterial fragility in other types of Ehlers Danlos Syndrome: Part 2 - Kyphoscoliotic Ehlers-Danlos Syndrome (EDS) by Dr. Neeti Ghali (consultant clinical geneticist and cooperating guest from the EDS National Diagnostic Services in London, UK).
Arterial fragility in other types of Ehlers Danlos Syndrome: Part 3 - Other rarer types of Ehler-Danlos Syndrome (EDS) by Dr. Neeti Ghali (consultant clinical geneticist and cooperating guest from the EDS National Diagnostic Services in London, UK).
Overview of animal studies in vascular Ehlers-Danlos syndrome (vEDS), Fransiska Malfait, clinical geneticist, Center of Medical Genetics, Ghent University Hospital, Ghent, Belgium.
Unmet medical needs in vascular Ehlers-Danlos Syndrome (vEDS) patients perspective by Juergen Grunert, President Deutsche Ehlers-Danlos Initiative e.V., ePAG co-chair for the Medium Sized Arteries Working Group (MSA-WG) and Charissa Frank, President bindweefsel.be, ePAG ​
Arterial Complications of Vascular Ehlers-Danlos Syndrome (vEDS) by Dr. Michael Frank, Cardiologist, Rare Vascular Disease Reference Centre, Assistance Publique-Hôpitaux de Paris, Hôpital Européen, Georges Pompidou (HEGP), Paris, France.
Gastrointestinal Complications in vascular Ehlers-Danlos Syndrome (vEDS) by Dr. Salma Adham, Vascular Physician, Rare Vascular Disease Reference Centre, Assistance Publique-Hôpitaux de Paris, Hôpital Européen Georges Pompidou (HEGP), Paris, France.

Hafa samband



​Email:  [email protected]

  • Forsíða
  • Hvað er vEDS?
    • Einkenni vEDS
    • Hvað veldur vEDS
    • Að lifa með vEDS
  • Um samtökin
    • Fundargerðir
  • Fróðleikur
    • Aðrar vefsíður um vEDS
    • Af hverju er Zebra tákn EDS?
    • Greinar
    • Myndbönd
    • Rafræn tímarit
    • Áhugavert efni
  • Greiningarferli
  • Celiprolol og vascular EDS
  • Heilbrigðisstarfsfólk