According to a story from The Washington Post, Enrique Galvan has been subjected to relentless bullying and rejection ever since he first started school. The reason why? He was diagnosed…
According to a story from findmecure.com, an often overlooked subject for many rare, chronic conditions is the impact that these long term illnesses can have on a patient's sex life.…
According to a story from Medical Xpress, new discoveries are revealing more and more about how the population of bacteria in our digestive system, known as the gut microbiome, can…
Happy Thursday! Today, we're highlighting stories on three patients facing different struggles: a professor, a Jeopardy host, and a man from New Jersey. We also have an article about a…
According to a story from Charcot-Marie-Tooth News, a team of scientists have successfully identified four new mutations that are capable of causing Charcot-Marie-Tooth disease. These mutations affect the GJB1 gene. These new…
.jpg)
Fifty years ago, the air base in Ho Chi Minh City, formerly Saigon, was the world’s busiest airport. The base is now surrounded by four neighborhoods with about 111,000…
According to a story from globenewswire.com, the biopharmaceutical company Denali Therapeutics, Inc. has recently announced that its experimental product candidate DNL310, which is currently being developed as a treatment for…
On the weekend of June 7th through 9th, I had the privilege of attending the 2019 International Waldenstrom's Macroglobulinemia Foundation's Annual Educational Forum in Philadelphia, Pennsylvania on the behalf of…
According to a publication from BioPortfolio, China's National Medical Products Administration (NMPA — similar to the American FDA) recently approved BioMarin's mucopolysaccharidosis type IVA drug Vimizim for use in the…
According to a story from Alabama News Center, a scientist affiliated with Southern Research, Dr. Rita Cowell, has been hard at work researching new potential treatments for amyotrophic lateral sclerosis,…
Answer: This iconic game show host - who was diagnosed with stage 4 pancreatic cancer earlier this year - has miraculously overcome the odds, announcing he is in "near remission."…
At the 2019 American Thoracic Society Conference this year multiple presentations demonstrated the importance of the Pulmonary Fibrosis Foundation's Patient Registry. About the Registry This registry was created by the Pulmonary…
According to a story from Business Wire, the biopharmaceutical company X4 Pharmaceuticals, Inc. and the medical genetics company Invitae Corporation have recently announced that they have come into a parternship…
According to a story from globenewswire.com, the biopharmaceutical company ContraVir Pharmaceuticals, Inc. has recently announced that its experimental drug CRV431 was able to successfully decrease scarring of the liver in…
According to a story from Southwest Journal, retired professor Karen Warren was first diagnosed in 2015 with multiple system atrophy, a lethal neurodegenerative disorder. The disease carries an unpleasant group…
A recent article written by Craig Klugman debates the ethical obligations pharmaceutical companies have to conduct clinical trials for drugs which have a likely potential to benefit a patient population…
According to a story from kdrv.com, cystinosis is a very rare disease that only affects about 500 people in the US. Two of those patients are Emma Suetta and Everly…
According to a story from curetoday.com, the findings from a recent study indicate the patients with metastatic bladder cancer demonstrated an improved rate of response to an immunotherapy drug combination…
According to a publication from EurekAlert, a recent study helmed by the Royal Marsden NHS Foundation Trust suggests that female cancer patients tend to live slightly longer following treatment than…
What are Generic Drugs? Generic drugs are any medications "equivalent" to brand name pharmaceuticals. These drugs are much cheaper than the brand name medications and the United States Food and…
According to a story from blog.cincinnatichildrens.org, a diagnosis of Duchenne muscular dystrophy is always an alarming piece of news; learning that your child has a progressive muscle atrophy disorder that…
According to a publication from Yahoo News, five doctors interviewed by the media organization have reported meeting with a number of migrants detained by United States Customs and Border Protection…
The Importance of Braille For any child with a rare disease that leads to blindness or visual impairment such as Stargardt disease, Usher Syndrome, Alström syndrome, or Retinal Blindness life…
According to a story from Healio, data from two studies testing autologous tumor infiltrating lymphocytes (TIL) as a treatment for advanced, metastatic cervical cancer and melanoma suggests that this treatment…
Blood Donations For many people living with a rare disease such as Beta thalassemia, Hemophilia, Aplastic Anemia, Myelodysplastic syndromes, Acute Promyelocytic leukemia, and others, blood transfusions are not uncommon. For…
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.
