UK information and resources
SCAD research project led by Dr David Adlam Leicester Biomedical Research Centre SCAD research
British Heart Foundation information and resources SCAD page
Mayo Clinic information and resources
Mayo Clinic’s Youtube channel hosting videos about the SCAD research project initiated by Katherine Leon and Laura Haywood-Cory, who met on social media.
University of British Columbia information
A Dutch SCAD Registry is inviting SCAD patients in the Netherlands to register and complete a questionnaire.
Non-UK SCAD organisations
SCAD Alliance – American non-profit with a focus on raising awareness and coordinating multi-disciplinary collaboration.
SCAD Research – American non-profit with a focus on funding research carried out at Mayo Clinic.
Online heart forums
Carolyn Thomas’ Heartsisters blog
Facebook groups and pages
SCAD UK & Ireland Survivors (closed group for those diagnosed with SCAD living in the UK and Ireland)
SCAD Ireland (closed group for those diagnosed with SCAD living in Ireland)
SCAD Family and Friends Support group (closed group for family and friends of SCAD patients)
SCAD Survivors (global closed group for those diagnosed with SCAD)
Australian SCAD (closed group for those in Australia diagnosed with SCAD)
SCAD Support Group (public group for SCAD patients and their familes)
Netherlands SCAD (closed group for those in the Netherlands diagnosed with SCAD)
SCAD Denmark (closed group for those in Denmark diagnosed with SCAD)
Dissection spontanée de l’artère coronaire (DSAC) (closed group for French-speaking SCAD patients)
SCAD Community Sweden (closed group for Swedish SCAD patients)
SCAD Survivors New Zealand (closed group for SCAD patients in New Zealand)
SCAD Nordic International Walker Group (closed group for SCAD patients interested in Nordic walking as a form of exercise)
SCAD Support (for friends and families)
For a list of US and Canadian SCAD Facebook groups see this comprehensive list on the SCAD Alliance website.
European online community
RareConnect.org is safe, easy-to-use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. Beat SCAD created the SCAD Community.
Fybromuscular Dysplasia support
FMD-BE is based in Belgium, but the website is in three languages, including English.
FMD UK & Ireland Facebook group (closed group for patients of FMD in the UK and Ireland)