Useful links


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

SCAD research page

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

SCAD Study

Netherlands research

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

British Heart Foundation Women’s Room

Womenheart Inspire

Carolyn Thomas’ Heartsisters blog

Facebook groups and pages

Beat SCAD Facebook page

SCAD Survivors UK (closed group for those diagnosed with SCAD)

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)

Netherlands SCAD (closed group for those in the Netherlands diagnosed with SCAD)

SCAD Denmark(closed group for those in Denmark diagnosed with SCAD)

SCAD Support (for friends and families)

Life After SCAD 

Mayo Clinic SCAD page

European online community

Rare Connect online SCAD community

Rare Connect home page

Rare Connect Logo

Fybromuscular Dysplasia patient group

FMD-BE is based in Belgium, but the website is in three languages, including English.

FMD-BE’s closed Facebook group.

FMD group on Rare Connect.