The Swedish Marfan Association was founded 1993 and we still find many challenges for Marfan patients. What our members appreciate is our summer camps, our quarterly magazine with updates on the medical field and news from within the community as well as the opportunity to getting in touch with others in the same situation. We try to facilitate that through facebook, calling new members and through personal meetings at our summer camps and annual meeting.
We have a big board to ensure that we have time to work with the various projects we are involved in. A major focus has been lifestyle issues particularly to keep fit and being as healthy as we can possibly be. We had a two year long project around that with workshops and opportunities to meet and to learn. A book was the result of that: Må bra med marfan (Live well with marfan) available in Swedish as a pdf or paper back. On this webpage we also have the brochure with facts, Marfans syndrom – Information för den som har eller möter människor med Marfans syndrom (Marfan syndrome – Information for those who have or meet people with Marfans syndrome), all in Swedish.
Nationally we have patient representatives in the networks around the six university hospitals in Sweden. Networking is good for us!