According to a recent article, a young boy who has been battling biliary atresia and was put on a liver transplant list has made miraculous progress. About Biliary Atresia Biliary…
NBC2 has featured the story of pulmonary fibrosis patient John McDaniel since June. Now, McDaniel has received an incredible gift that will enable him to play his favorite sport…
A recent article highlighted the story of the world’s tallest man Sultan Kösen, in which it was revealed his growth is attributed to pituitary gigantism. Pituitary Gigantism Gigantism, also…
A recent article is bringing light to the condition known as misophonia, a disorder which causes people to have severe responses to certain sounds. Misophonia Misophonia, which literally translates…
Recently a woman was admitted to Odisha hospital where she was successfully treated for her rare blood disorder aplastic anemia. Aplastic Anemia Aplastic anemia is a rare, but serious,…
The Powassan virus is extremely rare, however there have been cases of it in the United States. The disease is carried by ticks, but a recent article has pointed…
According to a recent article, the parents of a boy with epilepsy were told they would need to prepare for him to have end-of-life care after they were unable…
In a recent article, English entertainer Tommy Steele has revealed what it was like being diagnosed with porphyria at a young age. Porphyria Porphyria is a group of disorders…
A recent article on Yahoo Finance, reports that Alnylam Pharmaceutical Inc.’s RNAi therapeutic, Amvuttra, has been approved by the FDA to treat polyneuropathy of hereditary transthyretin-mediated (hATTR) amyloidosis. Amvuttra (Vutrisiran)…
In a recent article at Star Tribune, the Mayo Clinic's Dr. Julio Sartori Valinotti discusses excessive sweating, or hyperhidrosis, a condition that affects arounds 15 million people in the United…
According to a recent announcement, Epilepsy Research UK has announced a funding collaboration with the Tuberous Sclerosis Association which will support the investigation of tuberous sclerosis complex (TSC)-associated epilepsy.…
Did you know that July 23 is World Castleman Disease Day? Each year, this day is dedicated to bringing awareness to those who are affected by Castleman disease, including patients, family…
In a recent article at Porphyria News, Claire Richmond shares how writing has helped her process her diagnosis of porphyria and to feel connected to the porphyria community. Claire Richmond’s…
According to a recent article, a study has shown that keratoconus patients who do not get their timely corneal crosslinking will have permanent changes in their corneal structure. Keratoconus…
Individuals with Duchenne muscular dystrophy have mutations in the gene that makes the protein dystrophin. This gene is the largest gene in the human body, with 79 exons. When there…
July 1, 2022 was World Bronchiectasis Day, a day dedicated to highlighting the number of cases of bronchiectasis that are growing rapidly. According to a recent article, a number…
According to a recent article, a man who developed terrifying symptoms following a stroke was found to have statin-associated immune-mediated necrotizing myopathy. Unexpected Symptoms After Stroke When her…
According to a recent article, the PI3K inhibitor umbralisib used to treat marginal zone lymphoma has had its approval withdrawn by the FDA. Marginal Zone Lymphoma (MZL) Marginal…
According to a recent article, $100 million has been given to four research teams by the Cancer Grand Challenges program for cancer research. Cancer Grand Challenges Program The Cancer…
Every year, June 30 is marked as Arthrogryposis Awareness Day. It was created by Ani Samargian, the founder of Arthrogryposis Multiplex Congenita Support Inc., back in 2005. The day is…
According to a recent article, PharmaDrug Inc. revealed that their study of combining cepharanthine and chemotherapy to treat IND-enabling esophageal cancer has yielded positive results. Esophageal Cancer Esophageal cancer occurs…
According to a recent article, the European Society of Cardiology has recommended that athletes undergo gene testing to prevent sudden cardiac death from exercise. Gene Testing Lethal variants can be…
According to a recent article, a new study where SIOD patients had a dual immune/solid organ transplant yielded positive results with patients accepting their new kidneys without rejection. Schimke Immune-Osseous…
Kelly Heger, founder of the AADC Family Network, shares her story of becoming a nurse to take care of her daughter with AADC deficiency. When my daughter, Jillian, was born…
Popular Canadian singer Justin Bieber stunned the world when he announced he was diagnosed with Ramsay Hunt syndrome following his facial paralysis. Ramsay Hunt Syndrome Ramsay Hunt syndrome (herpes zoster…
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.
