- Ehlers-Danlos National Foundation
- Ehlers-Danlos Network C.A.R.E.S.
- EDS Today
- Ehlers-Danlos Support UK
Postural Orthostatic Tachycardia Syndrome:
- The Joyful Heart Foundation: "The Joyful Heart Foundation works to foster a community that turns toward the issues of sexual assault, domestic violence and child abuse."
- To Write Love on Her Arms: "A non-profit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury and suicide."
- NDRI - The National Disease Research Interchange: Donations of tissue, organs or blood can be made for researchers to study rare genetic illnesses. These donations are prearranged and can be done during minor surgeries, major surgeries or postmortem.