Sophia Campa-Peters, a little 9-year-old suffering from a rare disease that resulted in several strokes, had a successful brain surgery just a few weeks ago, as reported Lubbock Online. The…
According to a story from Newswise, The University of Adelaide in Australia received a $1.19 million grant in order to spearhead an international research project. The project's aim is to…
There are fifty genetic diseases that can be characterized as lysosomal storage diseases (LSDs). Gaucher disease can be characterized as such. LSDs make up about one in every 8,000 births…
Welcome back, Patient Worthians! This week, we have an opportunity for Parkinson's patients, and an update on an Amyloidosis app. We also have two stories of teenagers whose lives suddenly…
In honor of Rare Disease Day arriving this month, the Organization for Rare Disease India (ORDI) has set up Racefor7 races in both Benefaluru, Mumbai as well as Washington D.C.…
A recently published scientific letter in the Spanish medical journal, Endocrinología, Diabetes y Nutrición draws a link between the combined use of inhaled steroids and liver enzyme blockers and the development…
According to a new study, people who suffer from rare disease are more prone to suffer from levels of anxiety, depression, pain and fatigue. The findings are proof that special…
According to a post from the National Organization of Rare Disorders, the organization has joined thirty-seven other patient and provider groups and organizations in opposition to the "Right to Try"…
Social and lively teenager Cindy Redmond's life was forever changed when her friend's step-father blew an air horn directly in her face, damaging them forever, originally reported by Daily Mail.…
According to a story from the Washington Post, Vanellope Hope Wilkins had to immediately be placed in sterile plastic when she was born. This was because her heart, while functional,…
Every single day is life-threatening for Lauren Stribling, a 15-year-old girl suffering from a rare genetic disease called Marfan syndrome, reported Daily Mail. A simple fall, push, or physical aggression…
Come to the 14th Annual WORLDSymposium in San Diego to learn more about the latest news and research in lysosomal diseases! Discuss the most recent information surrounding lysosomal diseases to…
According to a story from Health News and Information, The National Eye Institute presented Juergen Naggert, Ph.D., with a grant in order to study genetically connected changes that occur in…
Happy Groundhog Day, Patient Worthians! It might not feel like it, but spring is its way! This week, we have a story of a family who copes with the challenges…
According to EurekAlert!, covering a study conducted by Oregon State University, individuals living with rare diseases are more likely to experience a poorer quality of life. They are at high…
Researchers from Duke Health are hoping to discover new treatments for Lyme disease since the only way to currently manage the disease is by taking consistent antibiotics, which can be…
As an adult living with rare disease, there have been significant gaps in my employment history. I am sure many adults with health complications experience their workforce years this way,…
Happy Friday Patient Worthians! Believe it or not, we've almost made it through the first month of 2018! This week, we have a story of a young girl with Sanfillipo…
Living with the rare condition subglottic stenosis is never easy, especially when you're trying to keep up with your little boy. Caledon Enterprise reported that Emily Rogers does just that. She…
Out-of-pocket expenses for rare disease are astronomical, and the Ministry of Health (MOH), is taking time to find a more positive way to help benefit children and their families burdened…
On the pages of the Abby Grace Foundation website, you will find over twenty beautiful pictures of different children. Most of the children are smiling. One looks into the camera…
25-year-old Zoey Wright is a real force of nature! Having been diagnosed with the rare disease ulcerative colitis she found herself dependent upon a colostomy bag, yet that didn't stop…
The Alabama Rare Disease community has come together to host a special week in honor of the upcoming date February 28th, 2018, which is now the official International Rare Disease…
Reported by Strait Times, it was announced by Ministry of Health last week that there may be a potential fund developed to help children who suffer not only from a…
Tomorrow is Moebius Syndrome Awareness Day! Moebius Syndrome Awareness is celebrated globally each year - with the goal of raising awareness about this rare condition and to educate the many…
© 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.
