Marfan Initiative Österreich
Servus! 👋
The Austrian support group has been around for a while.
Marfan Initiative Österreich is the national support organization for people with Marfan syndrome and related conditions. It provides patient information, peer support, and education, and cooperates closely with specialist Marfan outpatient clinics in Graz, Vienna, and Innsbruck.
The association raises awareness to improve early diagnosis, promotes regular medical monitoring, and informs members about their rights in the healthcare system.
Each year it organizes “Marfan Day”, featuring medical lectures and opportunities for exchange among patients and families.
Meetups
The support group has regular in person meetings called “Plaudertreffen” where the member meet up for coffee and chat about their experiences.
Sometimes they also meet up online as it is not easy to organize meetups near everybody across the country.
Young Adults
The Marfan Initiative Österreich has its own subgroup dedicated to young adults where they can speak freely about their lives with Marfan.
This proved to be very helpful to them as they have been diagnosted much earlier in their lives as older generations and have faced other struggles growing up.
The young adult are meeting up once a year in person to strengthen their relationships. And have some fun together 🥳
The group has been around since 2021 and is still growing. Members from other german speaking countries are also a very active and loved part of the group. ❤
Contact
To learn more about the group visit their website:
Or take a look at their social media on instagram via @marfan.initiaitve and facebook.