Patient Worthy is delighted to announce that the National Society of Genetic Counselors (NSGC) has joined us as an advocacy partner! Genetic counselors play a critical role for individuals, families,…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
On April 28, 2022, the National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition hosted a webinar program titled "Walk in Our Shoes: The Experience of Rare…
Don't forget to check out Part 1 of our interview with Katheron Intson, where we discussed her background, her research experience in GRIN1, and the reasons behind why she developed…
Katheron Intson is a passionate scientist; she likes understanding how and why things work the way that they do. So when Katheron’s friend reached out about a mysterious health problem,…
Endemic in areas of Africa, southeast Europe, Central Asia, and the Middle East, Crimean-Congo hemorrhagic fever is an often-fatal viral illness which can cause severe issues. Researchers estimate that this…
According to a recent article, at the American Academy of Neurology annual meeting in 2022, the importance of disease-modifying therapies for patients diagnosed with rare pediatric disorders was highlighted. Lisa…
Dr. Christopher Austin, a National Institute of Health Director for Transitional Sciences, spoke at last year’s virtual conference honoring Rare Disease Day. According to an article in the NIH Record, Dr.…
Maria’s message is: “when in doubt, get a biopsy." Ten years ago, Maria Sylvia noticed a vertical streak on her thumbnail that at the time she thought was “cool." She…
Rise is a nonprofit organization that gives support to the disabled. Its services include rides by Lyft, the popular ride-sharing company. The funds are then reimbursed by their riders’ Medicaid…
Two years ago, China approved ensartinib as a second-line therapy for those with ALK+ non-small cell lung cancer (NSCLC). There have been advances over time. Now, according to a late…
According to a recent article, investigators have proposed a checklist that will aid in determining the strength of potential gene-disease relationships for rare disease. The Need It has already…
Professors Susan Treves and Francesco Zorzato, Basel University researchers, have recently presented the first potential approach to congenital muscle diseases. Their report was published in a recent article by Science…
Over recent weeks, stories have emerged regarding the frightening situation in Ukraine. People have lost their lives, their homes, and their sources of income. So what happens to those like…
Definitive Healthcare launched a survey in November 2021 to help physicians, researchers, and the rare community understand what the biggest challenges are for providing a rare disease diagnosis and treating…
To be able to pursue your dreams and passions is nothing short of empowering. But for many people within the rare disease community, there are barriers to pursuing our goals.…
On March 24, 2022, the Rare Disease Legislative Advocates hosted its monthly webinar to provide updates on legislation and public policy that is relevant to the rare disease patient community.…
For many rare diseases, the symptoms and experiences of patients are variable. It's extremely rare - if possible at all - to see a rare disease that can be be…
According to an article recently published in Business Wire, Global Genes, a leading advocacy group, released a progress report on rare diseases. The report includes data and studies as…
Note: this story was originally published by HAE Junior, a Patient Worthy partner Interview with Malena Vetterli from the European Reference Network (ERN-RITA) for rare immunodeficiencies, autoinflammatory and autoimmune diseases.…
Rare disease research itself is often overlooked in the medical sphere, so it's not difficult to imagine how many singular aspects of rare disease research are forgotten about completely. One…
At first, 34-year-old Chris Mee wasn’t too worried about his back pain. In fact, he kind of brushed it off – thinking it could just be sciatica, or aching from…
Written by Sumeet Maniar, CEO, WellBrain Continued From Part One Monitoring Adherence to Non-Opioid Treatments Given the links between chronic pain and mental health, a large part of managing chronic…
Currently, 95% of rare diseases don't have an effective treatment. Progress is being made, but there is just so much ground to cover in rare disease research. Studying rare diseases…
Written by Sumeet Maniar, CEO at WellBrain In the U.S., 60 percent of all adults have a chronic disease, and 40 percent have two or more. Chronic diseases, which often…
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