Yesterday, a group of experts presented "Changing lives: Long-term outcomes of MPS IVA & VI patients" at the Satellite Symposium sponsored by BioMarin. The program began with insights on the…
On the pages of the Abby Grace Foundation website, you will find over twenty beautiful pictures of different children. Most of the children are smiling. One looks into the camera…
On Tuesday night, children hit the streets for their Halloween candy quest. Because of her rare disease, Emily Sawyer, had to stay in. But that didn't stop the community from…
Being told your child has a rare disease is devastating. Then imagine being told that there’s absolutely nothing you can do about it. That was the reality for these parents,…
Lysogene, a biopharmaceutical company, announced at the end of May that enrollment in SAMOS (Sanfilippo A Multinational Observational Study) was completed. This is extremely exciting news for Sanfilippo syndrome (MPS…
© Copyright 2024 Patient Worthy
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.
