According to a story from UBC, a recent study has revealed that multiple sclerosis patients may start experiencing abnormal symptoms up to five years before they begin to manifest the…
According to a story from the Tampa Bay Times, Dr. Murray Shames, who works at the Tampa General Hospital, has been finding success using a new device to treatment dangerous…
Colin Wells, an actor who has previously played roles in the TV shows Hollyoaks and Casualty, has a son and daughter who are both diagnosed with mitochondrial disease. The source…
July 30th is Gastroschisis Awareness Day! Gastroschisis is a rare birth defect of the abdominal wall. With this condition, the baby’s intestines stick outside of the body through a hole in…
How someone deals with adversity is very unique to the situation and the individual. I have faced great adversity at different times in my life, some of which I handled…
According to a story from healthrising.org, the pharmaceutical company Cortene has been in the process of developing a treatment for chronic fatigue syndrome, and a clinical trial to test the…
Asher Camp is five years old. His parents, Amanda and Jeremy, had two daughters before Asher. That’s why when Asher progressed differently, they knew to be concerned. After quick action,…
According to a story from kait8.com, the drug development company Asceneuron SA recently announced that its experimental molecule ASN120290 was recently granted Orphan Drug Designation by the FDA. ASN120290 is…
According to a story by the Daily Record UK, Maggie Ritchie found out she was diagnosed with breast cancer and four years later was successfully cancer-free. She attributed the advanced…
Gene-editing therapies have made almost constant news headlines in relations to cancer treatment. The process of reprogramming the body’s immune cells to fight cancer seems more and more promising. The…
According to a story from Scleroderma News, the results from a recent study suggest that the six minute walk test can accurately predict outcomes for patients with systemic sclerosis. A…
The organisations Guerbet and IBM Watson Health are collaborating to develop an artificial intelligence tool designed to support the diagnosis and care of liver cancer. The source article can be…
A patient with Waldenström Macroglobulinemia taking part in a clinical trial of the experimental drug CLR 131 for the treatment of B-cell hematologic cancers is reported to have achieved a…
According to a story from Hematology Times, a medicine called melflufen, of the alkylating peptide class, appears to be effective in treatment resistant multiple myeloma. In a Phase 2 trial,…
CHICAGO, July 19, 2018 – The Pulmonary Fibrosis Foundation (PFF) and monARC Bionetworks have partnered to create the mobile app, PF Health, for individuals living with pulmonary fibrosis (PF). PF Health, now available on Apple App Store (iOS 9.0 or…
According to a video and article published by Duchenne UK, Professor Steve Winder has been granted additional funds to study the effectiveness of soy as a treatment for Duchenne muscular…
Chronic pain has a sinister way of impacting practically every aspect of our lives. One major area is our social life. Since chronic pain is often misunderstood by others and…
According to a story from PR Newswire, the biopharmaceutical company AbbVie has recently announced that it has sent a supplemental New Drug Application to the FDA for its product venetoclax,…
Clovis Oncology, Inc. has announced that they have submitted an application to the European Medicines Agency (EMA). The application is to extend the drug Rubraca’s®(rucaparib) marketing authorisation to include maintenance…
According to The Hindu, the Institute of Child Health (ICH) in Egmore, India is soon going to be able to offer more medical options to children with lysosomal storage disorders…
CannTrust Holdings Inc. and Australia’s Gold Coast University Hospital will work together to carry out a clinical trial. The study will evaluate CannTrust’s cannabidiol oil capsules as a way to…
People Magazine published an article about 20-year-old Kara Dunn who suddenly became paralyzed during a vacation to Spain, due to a rare disease she didn't know she had. Guillain-Barré Syndrome…
The National Health Service (NHS) England is facing criticism following their decision not to fund the drug everolimus as a treatment for tuberous sclerosis complex associated refractory epilepsy. In comparison,…
According to a story from the U.S. Food and Drug Administration (FDA), Commissioner Scott Gottlieb has released a press release which discusses in detail the agency's efforts in the development…
MedicNova Inc. has announced the results of subgroup analyses after a finished clinical trial. The trial was designed to evaluate MN-166 (ibudilast) as a possible treatment for amyotrophic lateral sclerosis…
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.
