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
Leicester Biomedical Research Centre press release on the paper discussing the newly discovered genetic risk for atypical heart attacks in women, Association of the PHACTR1/EDN1 Genetic Locus With Spontaneous Coronary Artery Dissection, published in the Journal of the American College of Cardiology.
Dr Adlam discusses the genetics paper (see above).
University of British Columbia information
A Dutch SCAD Registry is inviting SCAD patients in the Netherlands to register and complete a questionnaire.
Facebook pages & groups
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)
SCAD Italy (closed group for SCAD patients in Italy)
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)
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
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 information and support
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.
First International FMD consensus paper
Videos from first FMD Conference January 2019
Vascular Ehlers Danlos Syndrome
Connective tissue disorders
Mental health support
SCAD support webinars
Vicky Bailey, who had a SCAD in May 2019, is a psychotherapist and coach. She has been documenting her SCAD journey in video blogs on her Youtube channel. Click hear to view Part 1.
She has also very kindly done some free webinars for SCAD patients focusing on such as gratitude, anxiety, journalling and being mindful.