If you or someone you know has Ehlers-Danlos syndrome (EDS), you probably know a great deal about it, making you part of a very small population. Not many people have an understanding…
‘Tis the season! Picture it. Salem, Massachusetts. It’s 1692 and suddenly, things have gone horribly, horribly wrong for you. In the middle of the night, a small band of angry…
What are you going to be doing on the afternoon of Halloween? Some kind-hearted people will be participating in a walk, for a spooky great cause. On Saturday October 31st…
Imagine having a disorder that controls your movements. A disorder that causes painful muscle contractions that can’t be stopped. Imagine being in a wheelchair because of this....and wanting to dance.…
Patient Worthy attended the EveryLife Foundation’s annual forum this past Tuesday in Washington, DC. It was a full day workshop about why incorporating the patient perspective into the various phases of developing drugs…
Patient Worthy is bringing another conference to you through live tweets (@PatientWorthy)! Yesterday and today our director of advocacy is attending the Orphan Drug Summit in Copenhagen , Denmark. Among…
AAMDSIF, The Aplastic Anemia and MDS International Foundation, and George Washington University School of Medicine and Health Sciences hosts the Bone Marrow Failure and Myeloid Neoplasia event in Tysons, VA.…
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