Useful links

 

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.

Facebook pages & groups

Beat SCAD Facebook page

Mayo Clinic SCAD page

Europe

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

SCAD France (closed group for SCAD patients in France)

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

SCAD Community Sweden (closed group for Swedish SCAD patients)

Rest of the world

Australian SCAD (closed group for those in Australia diagnosed with SCAD)

Dissection spontanée de l’artère coronaire (DSAC) (closed group for French-speaking SCAD patients)

Life After SCAD 

SCAD Angels for people who have lost family to SCAD.

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)

SCAD Support Group (public group for SCAD patients and their families)

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

SCAD Survivors New Zealand (closed group for SCAD patients in New Zealand)

For a list of US and Canadian SCAD Facebook groups see this comprehensive list on the SCAD Alliance website.

European online community

Rare Connect online SCAD 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.

Rare Connect home page

Associated conditions

Fybromuscular Dysplasia information and support

Fibromuscular Dysplasia Society of UK & Ireland

FMD UK & Ireland Facebook group (closed group for patients of FMD in the UK and Ireland)

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.

First International FMD consensus paper

Journal of Hypertension

Vascular Medicine

 

Vascular Ehlers Danlos Syndrome

Annabelle’s Challenge

Ehlers Danlos Support UK

 

Connective tissue disorders

NHS information on connective tissue disorders

 

Mental health support

Counselling information from the NHS

PTSD UK

Anxiety UK