Members and Family Resources
Links that may be helpful
🌿 Ehlers-Danlos Syndrome (EDS) Resources
The Ehlers-Danlos Society – Global nonprofit dedicated to EDS research, education, and support.
🔗 https://www.ehlers-danlos.com/The Ehlers-Danlos Society – GP Toolkit – A guide for doctors on managing EDS in primary care.
🔗 https://gptoolkit.ehlers-danlos.org/Ehlers-Danlos Support UK – A UK-based charity providing education and support.
🔗 https://www.ehlers-danlos.org/Ehlers-Danlos Syndrome Network C.A.R.E.S. Foundation – A foundation supporting those with EDS.
🔗 https://www.ehlers-danlos.org/Genetics Home Reference – Ehlers-Danlos Syndrome – In-depth genetic overview of EDS.
🔗 https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndromeEhlers-Danlos News – Latest research updates and stories related to EDS.
🔗 https://ehlersdanlosnews.com/The Ehlers-Danlos Society – Webinars – Educational webinars on EDS.
🔗 https://www.ehlers-danlos.com/eds-resources/webinars/The EDS Clinic – Learning Center – Resources on EDS, MCAS, and POTS.
🔗 https://www.eds.clinic/resourcesDr. Jim Harris MD – Articles – Medical articles on living with EDS, MCAS, and POTS.
🔗 https://www.jimharrismd.com/articlesStanding Up to POTS – EDS and POTS – Exploring the link between EDS, POTS, and MCAS.
🔗 https://www.standinguptopots.org/eds-and-potsThe Ehlers-Danlos Society – Mast Cell Disorders in EDS – Overview of how mast cells impact EDS.
🔗 https://www.ehlers-danlos.com/2017-eds-classification-non-experts/mast-cell-disorders-ehlers-danlos-syndrome-2/Chronic Pain Partners – EDS, POTS, and MCAS Linked by One Gene Mutation – Exploring possible genetic links.
🔗 https://www.chronicpainpartners.com/eds-pots-mcas-linked-one-gene-mutation/
⚡ Postural Orthostatic Tachycardia Syndrome (POTS) Resources
Dysautonomia International – Nonprofit dedicated to autonomic nervous system disorders.
🔗 https://www.dysautonomiainternational.org/POTS UK – UK-based organization supporting individuals with POTS.
🔗 https://www.potsuk.org/POTS Place – Resource hub for POTS symptoms, diagnosis, and management.
🔗 https://www.potsplace.com/Wikipedia: Postural Orthostatic Tachycardia Syndrome – A comprehensive overview of POTS.
🔗 https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndromeMedical News Today – Ehlers-Danlos Syndrome and POTS – Discussing the link between EDS and POTS.
🔗 https://www.medicalnewstoday.com/articles/ehlers-danlos-syndrome-and-potsHealth.com – Coat Hanger Pain – Explaining a symptom often associated with POTS.
🔗 https://www.health.com/coat-hanger-pain-8709348
🔥 Mast Cell Activation Syndrome (MCAS) Resources
The Mastocytosis Society – Information on mast cell disorders, including MCAS.
🔗 https://tmsforacure.org/Mast Cell Action – UK charity providing MCAS education and support.
🔗 https://www.mastcellaction.org/Mast Cell Action – Resources – Tools and guides for MCAS management.
🔗 https://www.mastcellaction.org/resourcesMast Cell Activation Syndrome – Diagnosis and Treatment – Medical research article on MCAS.
🔗 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/SELF Magazine – What to Know About MCAS – A beginner-friendly article on MCAS.
🔗 https://www.self.com/story/what-is-mcasMast Cell Activation Syndrome Awareness – Patient stories and education on MCAS.
🔗 https://www.mastcellactivation.org/
📚 Other Educational & Multi-Condition Resources
The Dysautonomia Project – EDS, POTS & MCAS with Dr. Juan Camilo Guzman – A video discussion on the trifecta.
🔗 https://thedysautonomiaproject.org/eds-pots-mcas-with-dr-juan-camilo-guzman-md-msc-frcpc/Standing Up to POTS – Support and advocacy for POTS patients.
🔗 https://www.standinguptopots.org/MedBridge – HSD/EDS, MCAS, and POTS Course – Educational course on the trifecta.
🔗 https://www.medbridge.com/educate/courses/hsd-eds-mcas-and-pots-heather-purdin-patricia-stott
💜 This list of 30 trusted resources provides essential support, research, and community for individuals living with EDS, POTS, and MCAS. 🦓✨