PRESENTER: Prof. Dr. Michael Jacobs, Chairman and Professor of Surgery, the Maastricht University Medical Center
PRESENTER: D. Doze, Nurse Specialist congenital cardiology, Radboud University Medical Center Nijmegen
Download Abstract | Download Powerpoint
PRESENTER: Y. Hilhorst-Hofstee, MD, Clinical Geneticist, Leiden University Medical Center
PRESENTER: R. Franken, MD, Resident (AIOS) Cardiology, Academic Medical Center, Amsterdam
Download Abstract | Download Powerpoint
PRESENTER: B.M.E. Mees, MD, Vascular surgeon, Maastricht University Medical Center
To provide help in an emergency situation, we have made an Emergency card with information on Marfan Syndrome in 13 languages (Arabic, Dutch, English, French, German, Greek, Italian, Malay, Norvegian, Russian, Slovak, Spanish, Turkish).
Download it here: Emergency card
Young Adults Report 2019 and invitation newsletter
Overview of the medical and research literature of Marfan Syndrome in 2016-2017
RareConnect.org is an international platform for rare diseases patients’ to answer their need for information and connection by creating online communities and discussion groups for specific diseases.
There is still no community for Marfan syndrome there yet. We in CC for Marfan Europe Network are therefore looking for someone or some people who think it would be fun working on this. If you are interested please contact our chair at chair@marfan.eu ,
Useful links for us associations in Europe who work with Marfan Syndrome:
First, our own of course – Marfan Europe Network
www.marfan.eu
EURORDIS
www.eurordis.org
VASCERN
Resources in English: https://vascern.eu/
Resources by language / in different EU languages: https://vascern.eu/eu-languages/
ORPHANET
www.orpha.net
RareConnect
www.rareconnect.org
Commission expert group on rare diseases
ec.europa.eu/health/rare_diseases/expert_group
EuroGentest
www.eurogentest.org
EUROPLAN (European Project of Rare Diseases National Plans Development)
www.europlanproject.eu
European Reference Network – ERN
ec.europa.eu/health/ern/policy
RARE Best Practices
www.rarebestpractices.eu
It would be nice to have a list of all the reference centres for Marfan Syndrome in the different countries. It would also be useful for the Marfan Europe Network’s archives.
All countries dos perhaps not have centres only handle Marfan Syndrome, but also the more general connective tissue disorder centres can be added (all kind of place where you can go, when you have Marfans, and where they will know what to do with us and to which specialist they should send you.
So you, who know any such medical facility in your country, please send us…
Name of health care facility
Address
Contact information how the patient can reach them
Email this information, Karin Olsson at karinolsson@me.com
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