LIST OF MARFAN REFERENCE CENTERS
Dear MEN members,
At our latest biennial meeting in Drammen Norway, we commonly decided to make out a list of all the Marfan expertise centers available throughout Europe, or at least in the countries that each of you represent. Some of these centers are collaborating with the VASCERN as full members, some as affiliated members and some might not be registered at all. Therefore we kindly ask you to send us (firstname.lastname@example.org) a list of the centers which you know in each of your country, with name of the Hospital, ZIP code and city. If ever you have a contact name to add, it would be very much appreciated.
We look forward to receiving your feedback on this matter, as well as the for the document repository, that was the topic of our latest newsletter dated October 21. We have not received from all the members their leaflets and documents.
A short update about Vascern: During our latest 2-day-seminar beginning of November, 15 patient advocates were present representing 5 working groups (Hereditary Haemorrhagic Telangiectasia, Medium Sized Arteries, Pediatric and Primary Lymphedema, Vascular Anomalies and Heritable Thoracic Aortic Diseases), among which only one person for the HTAD group. Around 70 doctors attended the meetings representing 11 countries.
The European Reference Networks were created with following purposes: improve diagnosis, avoid diagnosis odyssey, provide care to patients affected by a rare disease throughout the European community, develop clinical guidelines, DO’s and DON’Ts, common registries, outcome measures, improve quality of life and raise awareness for rare diseases, especially for Marfan syndrom, as we know that an undiagnosed patient is a patient potentially in danger.
The patients are included in the system. Our working group HTAD (heritable thoracic aorta diseases) really needs additional motivated English speaking members, from all over Europe. Please feel free to contact us for any information you would need about the role of the patient advocates within the Reference Networks. If you are a volunteer in a patient organisation in a European country, you are most welcomed to join our working group. Please visit the Vascern webpage and you will find what the mission of a patient advocate is.