It’s lonely when your child has an ultra-rare disease. There's not sufficient funding; there may not be a movement to rally behind, no community to share stories and struggles with.…
According to a story from EurekAlert!, farm workers from across the world are experiencing increased rates of chronic kidney disease. The precise reason for the increased rates are unknown, but…
According to a story from The Dermatologist, a recent study supported by Eli Lilly and Company has revealed just how harmful the impact of step therapy can be on patient…
According to a story from Buzzfeed News, Maria Isabel Bueso was born in Guatemala with mucopolysaccharidosis VI, also known as Maroteaux-Lamy syndrome. At age seven she traveled to the US…
September is Tyrosinemia Awareness Month! The good people of the Network Of Tyrosinemia Advocates (N.O.T.A.) have organized a family weekend later this month aimed to bring the Tyrosinemia community together. Let's…
.jpg)
According to a recent article in Archive Today, an international band of amateur biologists, or "biohackers" announced that they intend to eventually market a knock-off of Glybera, a one…
The Advisory Committee on Heritable Disorders is hosting a webinar on September 24, as part of its mission to reduce morbidity and mortality in newborns and children who have, or are…
According to a story from curetoday.com, the American Society of Clinical Oncology (ASCO) recently announced its 2018 Advance of the Year. For 2018, the organization chose to highlight progress that…
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.
