Rare disease research can be difficult to conduct, with one of the major contributing factors being funding. Research is expensive, and I mean really expensive. That's why grant funding and other…
According to a recent article, the family of a young boy from Australia who is diagnosed with the rare genetic disease mucopolysacchariodosis type 1 (MPS 1) is sharing his story to…
The American Academy of Neurology (AAN) held its Annual Meeting from April 22-28, 2022. During the meeting, various stakeholders discussed trends, science, and research within the field of neurology. According…
When it comes to rare diseases, many doctors simply just don't know the proper way to diagnose, monitor, and treat them. It's difficult to know how to respond to every…
According to a recent article, a storytelling and research hub has been launched by the nonprofit Good Days to create a platform for those in the chronic and rare disease…
In Detroit, activists recently came together to raise money for pancreatic cancer research through a walk called “The PanCAN PurpleStride walk.” Each year about 62,000 people are newly diagnosed with pancreatic…
Patients are advised to look for and report symptoms of a mysterious liver disease that has recently caused the death of three Indonesian children. Newsmax’s most up-to-date reports state that…
At 13 years old, Emma Woods was diagnosed with Turner syndrome, a rare chromosomal condition. Unfortunately, Turner syndrome can cause a number of health or developmental problems, such as heart…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Those who are at high risk for pancreatic cancer now have a new screening option thanks to a novel program developed by Hackensack University Medical Center. The Center has launched…
Tourette Syndrome affects one million Americans. 2022 is the Tourette Association of America's 50th Anniversary, and to celebrate, you can get involved in Tourette Syndrome Awareness Month from May 15th…
Mereo BioPharma Group has just announced positive results from their Phase 2 study called ASTRAEUS. This study investigated alvelestat (MPH-966), which is an oral neutrophil elastase inhibitor, as a treatment…
When Sophia Scott was growing up, her parents noticed that she was displaying a variety of different potentially concerning traits. They began undergoing some tests. Eventually, just one day before…
Gannex has just announced that they have dosed the first patient in their Phase 2 clinical trial examining ASC42 as a treatment for those diagnosed with primary biliary cholangitis (PBC).…
The Retina World Congress, a premier congress to discuss issues in retinal health, recently took place from May 12-15, 2022. During the Congress, various speakers and stakeholders discussed advances…
Many in the medical profession believed that the road to rapid recovery in myalgic encephalomyelitis was through exercise. Eighty-two-year-old Veronica Jones of Gloucestershire, UK believes that the advice given…
What happens when you treat your condition, but the medication isn’t effective? Sometimes, other approved medications are beneficial for patient use, but other times, there are no approved medications.…
According to a recent article, the parents of Anyiah Johnson are working to raise awareness for their daughter’s rare diagnosis of autoimmune encephalitis. Autoimmune Encephalitis Autoimmune encephalitis (AE) is a…
HAE Junior, an advocacy group from the Czech Republic and a Patient Worthy partner organization, is issuing a renewed call for submissions for its Stronger Than HAE art exhibition. This…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a story from BBC, 28 year old Saskia James has struggled with myalgic encephalomyelitis (also called chronic fatigue syndrome) for years, which began with the onset of seizures…
Continued From Part One He cannot participate in the sports and physically demanding hobbies he once enjoyed. “Due to pool & gym closures during the Covid pandemic, walking was my…
For the first three years of Brody Koslowski's life, he seemed - on the surface - to be a healthy, happy boy. So his parents, Matt and Molly, were…
In Europe, Orphan Drug designation is granted to therapies intended to treat, prevent, or diagnose a rare, life-threatening, or debilitating disease. For the purpose of this status, rare conditions…
According to a story from the Children's Tumor Foundation (CTF), the month of May is recognized as Neurofibromatosis (NF) Awareness Month. This is a time for spreading awareness about neurofibromatosis…
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.
