Finding your way to answers

I found their hypermobile Ehlers-Danlos diagnostic criteria on a Sunday afternoon. Scrolling through pages that finally described what I'd been living with. The 2017 criteria I used are now being updated through their Road to 2026 initiative, with new guidelines expected late this year.

The week I learned my neck was broken, I watched every craniocervical instability video they had. The first place anyone explained what had just happened to me. They're now leading a Delphi consensus initiative to establish objective diagnostic criteria for CCI, so future patients have clearer answers than I did..

The Mast Cell Activation Syndrome organization I wish I'd found years ago. Their patient guides and emergency room protocols are going to my next appointment. They're now running a TeleECHO program training clinicians to recognize and treat mast cell disease, building the clinician network these patients currently can't find.

Where I send anyone newly diagnosed who doesn't yet know which patient community is theirs. They've designated Rare Disease Centers of Excellence across the country, academic medical centers built to handle the conditions most providers can't.

The first organization devoted solely to Tethered Cord Syndrome, founded in 2024 by patients and parents of patients. Where I learned what tethered cord syndrome actually is.