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.…
One of Patient Worthy's partners, The MDS Foundation, will be hosting another FREE event! When: Saturday, March 3rd, 2018 9:30am – 2:00pm Where: Embassy Suites Albuquerque Hotel & Spa 1000…
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…
Earlier this year, Patient Worthy featured Ashley and her non-profit Love Not Lost – an organization that provides portrait sessions and photo albums for families dealing with a terminal illness…
Today, Professor Elsa Shapiro and Dr. Christina Lampe presented "Cognitive Impairment in Patients with MPS II: From Disease Burden to Cognitive Testing" at Satellite Symposium, an event sponsored by Shire…
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"…
A recent study from Michigan State University confirms that mice do indeed have significant similarities to humans which is beneficial for cancer research, reported News Wise. This has been in…
When someone is diagnosed with a rare disease, or one that has no cure, it is not uncommon for the person to begin to have mental health challenges as well.…
This week is Congenital Heart Defect Awareness Week! A congenital heart defect (CHD) is a problem in the heart's structure that occurs when a baby is born. Heart defects can range…
According to a story from SWNS, a grandmother who had survived a battle with ovarian cancer came face to face with the doctor responsible for developing the treatment that saved…
Many people aren’t aware that even if they have their emergency medication with them, with instructions, that it may not be given to them. Their carefully labeled, lifesaving treatment could…
According to an announcement from The Amyloidosis Research Consortium (ARC), the organization has launched version two of the My Amyloidosis Pathfinder (MAP) tool. The tool was developed as a way for…
A new device called The Third Pole will soon be on the market to help newborns with pulmonary hypertension breathe better. Pulmonary hypertension is a type of high blood pressure…
Who said helping cure and treat rare diseases couldn't be fun?! Last week, Three Lake Partners - a venture firm that invests in healthcare and quality-of-life solutions for patients dealing…
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,…
The United Network for Organ Sharing recently altered the rules of the organ transplant system. Geography is no longer as crucial a factor in securing a needed organ. Some view…
Michael Mauti, a linebacker for the New Orleans Saints, had been struggling with ulcerative colitis for years, and it was getting worse. The thought of eating become one of great…
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…
A 23-year-old NBC news anchor received the words that everyone fears, "you have cancer". Boston Globe Media Partners reported the experience that young Natasha Verma faced upon her diagnosis. While it's…
The first new treatment approved for amyotrophic later sclerosis (ALS) has generated a lot of excitement and enthusiasm in the ALS community since its approval in May of 2017, but…
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…
It all started with extreme allergic reactions around her mouth when eating certain fruits, then overtime she grew to become allergic to just about everything, even her own tears and…
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…
Start a conversation - and look a little snazzy while doing so! - by wearing purple today (February 2nd) to raise aware for neuroblastoma. Neuroblastoma is a rare cancer that…
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