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Patient Resources for EDS, POTS & MCAS
Living with Ehlers-Danlos syndrome, POTS, or MCAS often means doing a lot of your own research. We've gathered trusted organizations, provider directories & patient communities in one place to make that a little easier.
Ehlers-Danlos Syndrome & Hypermobility (HSD)
The Ehlers-Danlos Society
A global nonprofit for Ehlers-Danlos syndromes & hypermobility spectrum disorders.
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What Is EDS? A clear overview of the condition
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Healthcare Professionals Directory Search for EDS-aware providers by location, specialty & telehealth
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hEDS Diagnostic Checklist The criteria doctors use to diagnose hypermobile EDS
Online community
EDS & HSD community on Inspire A free online support community sponsored by The Ehlers-Danlos Society
POTS & Dysautonomia
Dysautonomia International
A nonprofit focused on research, physician education & patient support for autonomic nervous system disorders.
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About POTS What POTS is & how it's treated
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Find a Doctor A list of physicians who treat dysautonomia
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Find a Support Group Support groups for people living with dysautonomia
Online community
Dysautonomia community on Inspire A free online support community partnered with the Dysautonomia Support Network
Mast Cell Activation Syndrome (MCAS)
The Mast Cell Disease Society (TMS)
A nonprofit supporting patients, families & providers affected by mast cell diseases.
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Symptoms & Triggers of Mast Cell Activation Common symptoms & potential triggers
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Find a Physician Treatment & research centers for mast cell diseases
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Virtual Support Groups Free support meetings on Zoom, including MCAS-focused groups
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Emergency Room Response Plan Tools to bring with you to the ER
Find an allergist
Find an Allergist Search for an allergist/immunologist near you from the American Academy of Allergy, Asthma & Immunology
From the PICM Blog
A note about these resources:
These links are provided for general information. PICM is not affiliated with these organizations & doesn't endorse specific providers. Provider directories are created by the organizations that host them, so check credentials & fit for yourself. For a medical emergency, call 911.