According to a story from Pulmonary Hypertension News, It has been three years since Miloš Lazić had is first encounter with pulmonary arterial hypertension. As an active member of Serbia's…
According to a story from Physician's Weekly, a recent study found that small amounts of invisible blood in stool increases the possibility of early death from other causes. The study…
According to a story from Charcot-Marie-Tooth News, a recent study suggests that changes in the levels of two proteins in the body could serve as biomarkers to indicate the progression…
For anyone who has had to step into a doctor's office, you know the litany of emotions that run through your body. Anxiety, confusion, worry, exasperation - and to say…
The documentary The Bleeding Edge has just been made available on Netflix in the US and UK (27th July 2018). Described by Netflix as “controversial”, the documentary explores the impact…
I met Jon at the 2018 United Leukodystrophy Foundation Conference and had the privilege of learning his and his family's story. Jon was born in Wisconsin in 1992, joining the…
What do Dave Winfield, Steve Garvey, and Don Baylor Jr. all have in common? Besides all being big names in major league baseball, each of the famous athletes is contributing…
Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate. In her early twenties, Andrea became the legal guardian…
Happy End-of-July! As the week comes to a close, we want to spotlight four articles. We have an honest piece from PW contributor, Tom Seaman. Next, we investigate the root…
Don't feel bad if you've haven't heard of hemochromatosis - that's why we are here! Hemochromatosis (also known as iron overload disorder) is a disease that is often under-diagnosed. It…
An ongoing Phase 3 clinical trial program is investigating the drug PXT3003 as an experimental treatment for Charcot-Marie-Tooth disease type 1A in adults. Pharnext SA says that they expect to…
We here at Patient Worthy shine a spotlight on rare diseases, but these disorders often get overlooked by much of the media. So anytime a rare disease is discussed out…
In a Washington Post article by Ben Guarino, new cancer treatments lasso the power of naturally occurring immune cells in the body. Researchers are looking into ways modify them to…
Kruz and his sister Paizlee are the only known siblings diagnosed with the ultra-rare condition Schimke Immuno-Osseous Dysplasia. Their parents, Jessica and Kyle, are doing everything they can to raise…
Pets brighten the lives of many people across the world. There are a variety of studies and pieces of evidence that point to pets improving the quality of life for…
Patients living with PKU (phenylketonuria) have hope as researchers look into new drugs that may help the body break down phenylalanine. PKU is an genetic disease in which the body lacks…
I am a patient who has ITP and attended the PDSA conference this year in Cleveland, Ohio. I learned so many new things from other attendees and from the outstanding…
Aidan Maddocks, 14, from Pietermaritzburg, was diagnosed with Biliary Atresia at birth, a childhood liver disease that only affects 1 in 10,000–15,000 live births. He was given a life expectancy…
Researchers from the Newcastle University are investigating the personal and financial impacts of persistent facial pain on patients in the UK, and what can be done to improve medical…
According to a story from ABC News, Alexia Baier was four years old when she came down with strep throat, an infection caused by group A streptococcus bacteria. It is a…
According to a story from the Los Angeles Daily News, for children with debilitating rare illnesses like cerebral palsy, epilepsy, or muscular dystrophy, it can often take a long time…
The National Center for Complementary and Integrative Health (NCCIH) has launched an app that is designed to inform people about the science behind herbs and herbal supplements commonly marketed for…
According to a story from pm360online.com, the company PledPharma recently announced that its drug candidate Aladote has completed its first safety evaluation with a positive result. Aladote is in development…
According to a story from healthline.com, many cancer survivors that have been treated with chemotherapy wind up facing significant challenges after their treatment. One such example is a phenomenon known…
Novartis has teamed up with Numinous Games to develop Galaxies of Hope, an app that is designed to support the neuroendocrine tumour (NET) community. You can read the original source…
© Copyright 2024 Patient Worthy
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.
