March 3, 2022 is being recognized at International TAPS Day, a time to spread awareness among the general public and the medical field about twin anemia polycythemia sequence (TAPS) a…
Judy was diagnosed at age 45 with the rare disease IgA nephropathy in 2019. The diagnosis changed her life forever. IgA nephropathy is difficult to diagnose until it has progressed,…
Clinical trials, drug development, and medical research have the potential to change the therapeutic landscape for patients with a wide variety of conditions. At ProQR, founder and CEO Daniel de…
If you have chronic pain like I do (mine is caused by a movement disorder called dystonia), or one of many other thousands of health conditions, or just dealing with…
Rare Disease Week 2022 is taking place this year on February 22nd to March 2nd. Though normally held in Washington, DC, the EveryLife Foundation for Rare Diseases, which organizes the…
Rare Disease Day, which is recognized each year on the last day of February, is probably the biggest day for rare disease patient advocacy annually. There are always a wealth…
Jordan's Guardian Angels, a nonprofit organization that supports the Jordan's syndrome community, has recently announced a new scholarship that will honor children that have died as a result of being…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…
Many people living in rural areas of the U.S. must drive a long distance to receive their medical treatments. According to Yahoo News, twenty-nine-year-old Leah Stavenhagen, now living and…
In Part 1 of "With Mais and Mal," Patient Worthy spoke with Mallory Cyr about microvillus inclusion disease (MID), Mallory's story, and the process of becoming an advocate. Today, we…
What does someone with a rare disease look like? With over 7,000 rare diseases in the world, affecting an estimated 300 million people, life with a rare disease (and people…
According to Dr. Deepak Chellapandian, a Johns Hopkins specialist in bone marrow transplant for rare diseases, the prognosis for his patient was very poor. Jocelyn was born with chronic…
Continued from Part One With time my speech improved and eventually I could speak fluently again. I also worked with an occupational therapist who helped teach me how to…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it's incurable and there's no medication to ease my condition. Since then, my life…
By Rachel Whetstone from In The Cloud Copy Food is fundamentally linked with celebrations in every culture around the world. Families gather for a feast at big holidays and birthdays…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
Written by Lucy Scott The 9th of October 2014 would be a day I would never forget... but in actuality, I don’t remember that day nor the years before. Every…
Patient Worthy had the privilege to attend in-person the Periodic Paralysis Conference, which took place from October 30-31, 2021 and was organized by the Periodic Paralysis Association (PPA). This event…
In a recent article from Porphyria News, Claire Richmond describes how she lives with acute hepatic porphyria (AHP), a rare disease that requires long-term management. Acute Hepatic Porphyria (AHP)…
For Part 2 of "Save Our Medicine," we continue talking with Tiffany, DeAnna, and Sara about their families' NPC journeys, as well as the push for medication access. If you…
To learn more about Rachael's story, Niemann-Pick type C (NPC) symptoms, the diagnostic process, and how her mother Debbie found and offered support to other families, take a look at Parts…
In Part 1 of Rachael's story, I spoke with her mother Debbie about what Niemann-Pick type C (NPC) is, the beginning of the diagnostic journey, and how Dr. Behar helped…
In Part 1 of "The TSC Navigator: A New Resource to Guide Families through the TSC Journey," I sat down with Ashley Pounders to discuss the TSC Navigator, its purpose,…
“Hi, I’m Rachael, and I’m forever 33.” When Debbie Kaflowitz remembers her daughter, she thinks about everything that Rachael loved to do. Rachael enjoyed dancing and performing in ballet recitals,…
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