Finding your way to answers
The science is out there, but rarely in one place. These are the specialist research, community resources, and tools I relied on, gathered with my own notes into roadmaps for connective tissue disorders, CCI, Chiari, and the conditions that travel with them. External resources are educational only. Inclusion does not imply affiliation, endorsement, recommendation, or medical advice.
Communities
Diagnostics
Reading
Videos
Podcasts
Communities
Ehlers-Danlos Society
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.
Communities
Bobby Jones Chiari & Syringomyelia Foundation
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..
Communities
The Mast Cell Disease Society (TMS)
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.
Communities
National Organization for Rare Disorders (NORD)
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.
Communities
Tethered Cord Support Alliance
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.
Communities
Diagnostics
Reading
Videos
Podcasts
Communities
Ehlers-Danlos Society
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.
Communities
Bobby Jones Chiari & Syringomyelia Foundation
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..
Communities
The Mast Cell Disease Society (TMS)
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.
Communities
National Organization for Rare Disorders (NORD)
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.
Communities
Tethered Cord Support Alliance
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.