Before you read, make sure you check out Parts 1 and 2 of our interview. In Part 1, we discussed what Wegener's granulomatosis (GPA) is, Anna's diagnostic journey, and her first episode of symptoms.…
Don't forget to read Part 1 of our interview, where we discuss what Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are, and learn more about how Viktoria ended up hospitalized. Today,…
StatNews recently carried an article describing a paper prepared by New York’s Tisch Research Center and published this week in the Brain Communications journal. The paper contains promising breakthroughs on…
Ally and Jake Shaw always dreamed of having a big, happy family. The pair began their journey with their daughter Nala, now just under 3 years old, and later brought…
Postnatal Zika virus can cause other complications and health issues for those affected. According to Neurology Advisor, one such complication is Guillain-Barré syndrome (GBS). Researchers believe that GBS following postnatal…
Before you read any further, make sure you've read Part 1 of our interview, where Anna and I discussed what Wegener's granulomatosis (GPA) is, her diagnostic journey, and how she managed her…
Viktoria Cupay is no stranger to raising awareness about underserved and invisible illnesses. In 2016, two years after she began searching for a diagnosis, Viktoria found out that she was…
It can sometimes be difficult to spur research and drug development within the rare disease space. For this reason, the Orphan Drug Act was created. The Orphan Drug Act provided…
Business Wire published an August 10th news release announcing that Cure Rare Disease, a non-profit based in Boston, Massachusetts received FDA approval to administer CRD-TMH-001 (CRD), its first-ever therapeutic.…
By definition, NASH or nonalcoholic steatohepatitis is a form of fatty liver disease. NASH may be a result of a metabolic disorder such as diabetes or obesity that develops…
When Anna tells me about her diagnosis of Wegener’s granulomatosis just about thirty years ago, she shares that she does all that she can to not allow it to encompass…
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…
When Josh Wright, 13, was younger, he always seemed to be somewhat of a sickly child. His mother Julie remembers Josh's first hospitalization at just one year old; her…
Happy Monday! This week, we have details on a sad story of a toddler passing away from very rare mesenchymal chondrosarcoma, new research about the genetic risk factors of non-alcoholic…
According to a story from Benzinga, the pharmaceutical company Inceptua Group has recently announced that the medicine paclitaxel micellar (marketed as Apealea) is now available in Germany. This medication is…
According to a story from Market Screener, the biotech company UNITY Biotechnology, Inc., has recently announced the release of data from 12 weeks and 18 weeks of its Phase 2…
In 2012, the FDA established its Rare Pediatric Disease designation initiative through the Food and Drug Administration Safety and Innovation Act. Rare Pediatric Disease designation is granted to drugs or…
Before reading, don't forget to head to Part 1 to learn more about Quris' founder Isaac Bentwich, why Quris was developed, and how the company is using its innovative bio-AI drug development…
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…
Have you ever heard of dysgeusia? Dysgeusia is a condition in which someone's taste is altered, making all foods taste either bitter, sour, sweet, or metallic. Research has shown…
According to a story from Upstate Medical University, the college's ALS Treatment and Research Center has been a certified center of excellence for research and clinical care that has helped…
Many people laud the accomplishments of clinical trials – and for, in some cases, good reason. Clinical trials have been crucial in identifying and developing therapeutic options for patients to…
It’s no secret that being a part of the chronic illness and/or rare disease community can sometimes be lonely and isolating. Many people, while empathetic to the challenges faced within…
Have you ever heard of Orphan Drug designation? This designation is granted by the FDA for drugs or biologics intended to treat, diagnose, or prevent rare conditions. Rare conditions…
Last year, Mandy Moore, 38, celebrated as she brought her son Gus into the world. Known for her roles in This Is Us, A Walk to Remember, and Saved (among many others), Mandy…
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.
