Members and Family Resources

Links that may be helpful

🌿 Ehlers-Danlos Syndrome (EDS) Resources

  1. The Ehlers-Danlos Society – Global nonprofit dedicated to EDS research, education, and support.
    🔗 https://www.ehlers-danlos.com/

  2. The Ehlers-Danlos Society – GP Toolkit – A guide for doctors on managing EDS in primary care.
    🔗 https://gptoolkit.ehlers-danlos.org/

  3. Ehlers-Danlos Support UK – A UK-based charity providing education and support.
    🔗 https://www.ehlers-danlos.org/

  4. Ehlers-Danlos Syndrome Network C.A.R.E.S. Foundation – A foundation supporting those with EDS.
    🔗 https://www.ehlers-danlos.org/

  5. Genetics Home Reference – Ehlers-Danlos Syndrome – In-depth genetic overview of EDS.
    🔗 https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

  6. Ehlers-Danlos News – Latest research updates and stories related to EDS.
    🔗 https://ehlersdanlosnews.com/

  7. The Ehlers-Danlos Society – Webinars – Educational webinars on EDS.
    🔗 https://www.ehlers-danlos.com/eds-resources/webinars/

  8. The EDS Clinic – Learning Center – Resources on EDS, MCAS, and POTS.
    🔗 https://www.eds.clinic/resources

  9. Dr. Jim Harris MD – Articles – Medical articles on living with EDS, MCAS, and POTS.
    🔗 https://www.jimharrismd.com/articles

  10. Standing Up to POTS – EDS and POTS – Exploring the link between EDS, POTS, and MCAS.
    🔗 https://www.standinguptopots.org/eds-and-pots

  11. The 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/

  12. 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

  1. Dysautonomia International – Nonprofit dedicated to autonomic nervous system disorders.
    🔗 https://www.dysautonomiainternational.org/

  2. POTS UK – UK-based organization supporting individuals with POTS.
    🔗 https://www.potsuk.org/

  3. POTS Place – Resource hub for POTS symptoms, diagnosis, and management.
    🔗 https://www.potsplace.com/

  4. Wikipedia: Postural Orthostatic Tachycardia Syndrome – A comprehensive overview of POTS.
    🔗 https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

  5. Medical News Today – Ehlers-Danlos Syndrome and POTS – Discussing the link between EDS and POTS.
    🔗 https://www.medicalnewstoday.com/articles/ehlers-danlos-syndrome-and-pots

  6. Health.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

  1. The Mastocytosis Society – Information on mast cell disorders, including MCAS.
    🔗 https://tmsforacure.org/

  2. Mast Cell Action – UK charity providing MCAS education and support.
    🔗 https://www.mastcellaction.org/

  3. Mast Cell Action – Resources – Tools and guides for MCAS management.
    🔗 https://www.mastcellaction.org/resources

  4. Mast Cell Activation Syndrome – Diagnosis and Treatment – Medical research article on MCAS.
    🔗 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/

  5. SELF Magazine – What to Know About MCAS – A beginner-friendly article on MCAS.
    🔗 https://www.self.com/story/what-is-mcas

  6. Mast Cell Activation Syndrome Awareness – Patient stories and education on MCAS.
    🔗 https://www.mastcellactivation.org/

📚 Other Educational & Multi-Condition Resources

  1. 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/

  2. Standing Up to POTS – Support and advocacy for POTS patients.
    🔗 https://www.standinguptopots.org/

  3. 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. 🦓✨