Aortic Surgery in Marfan
PRESENTER: B.M.E. Mees, MD, Vascular surgeon, Maastricht University Medical Center
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 chair Lauriane at email@example.com
Useful links for us associations in Europe who work with Marfan Syndrome:
First, our own of course – Marfan Europe Network
Commission expert group on rare diseases
EUROPLAN (European Project of Rare Diseases National Plans Development)
European Reference Network – ERN
RARE Best Practices
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
Contact information how the patient can reach them
Email this information, Karin Olsson at firstname.lastname@example.org