Dear fellow rare community, It is with great joy that I share my journey of self-discovery and self-love with you. It took me a while to fully embrace my uniqueness…
As bluebird bio ("bluebird") waited on FDA feedback regarding the manufacturing process for lovotibeglogene autotemcel (lovo-cel) genetherapy, the company disclosed that it would most likely miss its Q1 submission…
Each year, an estimated 20,100 people across America die from non-Hodgkin’s lymphoma (NHL). While treatment is available—namely chemotherapy and immunotherapy—researchers are always exploring new treatment options to help those affected…
A therapy is granted Orphan Drug designation if the FDA believes that this therapy will treat, prevent, or diagnose rare conditions. Rare conditions, in the United States, are those affecting…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
The first thing that you should know: osteosarcoma (a type of bone cancer) is treatable. In fact, when you treat osteosarcoma early enough, it is curable; children can live long,…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
