Beat SCAD and Rare Connect have launched an online community for those affected by Spontaneous Coronary Artery Dissection (SCAD).
Rare Connect is a patient-led initiative of Eurodis (the European Organisation for Rare Diseases). Rare disease patients, families and organisations across the world can develop safe, moderated online communities on the Rare Connect platform.
The community includes information about SCAD, including FAQs, patient stories, links to videos, research projects, recent articles, events and lots more. Members of the community can create and participate in discussions as well as tell their stories and learn from others affected by the condition. Most of the content is translated by Rare Connect into six languages: English, German, Spanish, French, Italian and Portuguese.
Many SCAD patients ‘met’ on social media and there are some very supportive groups for both survivors and their families. However, for SCAD patients who don’t use social media or don’t speak English, finding information and other SCAD patients can be tough.
By setting up this community, we hope it will help more SCAD patients, families and friends to connect with others affected by SCAD both in their own countries and across the globe.