September 24, 2022 will be recognized as Familial Hypercholesterolemia (FH) Awareness Day, a time to spread awareness about this under-recognized condition among the general public and in the medical field.…
Joe and Cynthia are the founders of Jordan's Guardian Angels, a Patient Worthy partner organization that is committed to supporting research into Jordan's syndrome, an incredibly rare disorder named after…
According to a story from Buzzfeed News, actor and activist Jane Fonda, age 84, recently announced that she was diagnosed with a form of non-Hodgkin lymphoma. She has begun treating…
If you are interested in learning about CMT or are even a little curious, this article will help to shed some light on this rare disease. You are invited by…
According to a story from Yahoo News UK, Dr. Paula Hunt had a CT scan earlier this year with alarming results. The scan appeared to show a large tumor in…
When Brett Devloo was fifteen years old, he lost his sight. It happened, he feels, suddenly; one minute, Brett was reading and writing notes in his history class and…
Written by Dennis Lodge Inclusion in the workplace is a big thing for virtually every major corporation in the world, however, the World Economic Forum statistics say that merely 4…
According to a story from klfy.com, 15 year old Mia Braseaux may seem like a normal teenager; she plays sports, goes to school, and socializes with friends. However, Mia was…
Written by Christina Fleagle There are millions of people around the world living with a rare disease, and for many, you may not know it by looking at them. But…
September 7 is World Duchenne Day, a day to help spread awareness about Duchenne muscular dystrophy among the general public and in the medical field. In recognition of this day,…
The Family Heart Foundation has a Mission. There is so much more to accomplish and you can help prevent heart attacks by spreading awareness. This could save future generations by…
Within the first few months after Reuben Jayce-Mills was born, he seemed to be progressing fairly normally. But when Reuben turned nine months old, his parents noticed some concerning…
Unfortunately, the drug development process can be difficult, especially in the rare disease sphere. Many drug developers choose to focus on larger disease states, as these are typically more…
According to a story from Buzzfeed News, Comedian Sandy Honig, best known for writing and starring in Three Busy Debras, was recently diagnosed with gastroparesis, a rare disease that impacts…
Acknowledgment: This story is sponsored by Catalyst Pharmaceuticals, Inc., and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted, and…
The Cure Mito Foundation, a Patient Worthy partner organization, and integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University, are hosting a virtual conference titled "Empower and Inspire: Understanding…
According to a story from Charcot-Marie-Tooth News, the Global CMT Research Convention is set to take place in Cambridge, Massachusetts on September 16-17, 2022. Organized by the CMT Research Foundation,…
Written by Muriël Marks, Executive Director, World Alliance of Pituitary Organizations History Between 2012-2014, Novartis started to send out personal invitations to acromegaly and Cushing’s patient advocates to represent their…
On July 27, 2022, the National Organization for Rare Disorders (NORD) hosted an online webinar titled "Drug Development for Rare Diseases: A Community Conversation." This program was designed to help…
The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this month is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…
On July 28, 2022, the Rare Disease Legislative Advocates (RDLA) hosted their monthly webinar for July. As always, these recurring meetings help provide critical updates to the rare disease community…
When Caroline Cheung-Yiu's son Alex started to walk around age two, it was clear that he was struggling with his balance and coordination; but instead of improving, his issues started…
According to a story from ozarksfirst.com, Jamie Simoson was taken completely by surprise when her three year old son Jonathan started complaining about a headache. As his condition worsened, Jonathan…
Fibrodysplasia ossificans progressiva (FOP) begins with very little warning. When children are born with FOP, they appear normal aside from a possibly characteristic malformation of the largest toe that…
When Stormi Vanden Bosch and Tyler Scotting found out they were expecting another son, they were thrilled. On October 31st, 2019, they welcomed their son Baylor to the world.…
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