top of page

Online Resources

Rare Disease Websites

Rare Disease Day logo

Click Here

Rare Disease Day, U.S.

Mast Cell Aware

Mast Cell Aware

Mast Cell Issues

The Ehlers-Danlos Society

The Ehlers-Danlos Society

A great resource for EDS info.

EDS Awareness

EDS Awareness

Rare Connect

Rare Connect

Rare Connect- Connecting Rare Patients A partnership of Eurordis and Nord

NIH

NIH

Branches of the NIH ORDR- Office of Rare Diseases GARD- Genetic and Rare Diseases

Dysautonomia International

Dysautonomia International

Dysautonomia goes hand-in-hand with EDS. Check your symptoms- find a doctor

NORD

NORD

Nord- Rare Disease Registry

Eurordis

Eurordis

Eurordis- European resources

Global Genes Project

Global Genes Project

Global Genes Project- helpful knowledge about genetic diseases

EDSUKlogo

EDSUKlogo

EDS Support UK- Info from the UK

Inspire

Inspire

Inspire- Online Support Groups for many different maladies. Sign Up for insights from patients.

The Coalition Against Pediatric Pain

The Coalition Against Pediatric Pain

TCAPP creates and shares webinars and information on pain and possible causes.

The Mastocytosis Society

The Mastocytosis Society

A glimpse into Mast Cell Diseases

MastSocCA

MastSocCA

Mastocytosis Society Canada

DINET

DINET

Dysautonomia Information Network

The internet contains many resources for connecting people with medical answers. These organizations prove to be on the forefront of new and improving information.

Click on the image to visit the web page. Click on left or right arrows, or thumbnails below, to toggle.

Links: A first glimpse at rare disease.

© 2014 by Chasing Zebras, Amanda Henderson. Proudly created with Wix.com

  • Facebook Social Icon
bottom of page