In 1972 William S. Sly, first identified a rare, progressive and devastating condition, which came to be known as Sly Syndrome, now known as MPS VII. This syndrome affects almost…
According to a story from time.com, birth control pills may help reduce the risk of developing endometrial and ovarian cancer. This was after taking into account other potential risk factors,…
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…
According to an article at Clinical Lab Products, a new genetic test for alpha-1 antitrypsin deficiency was recently approved by the Food and Drug Administration (FDA). This certification is the…
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…
Yesterday, a group of experts presented "Changing lives: Long-term outcomes of MPS IVA & VI patients" at the Satellite Symposium sponsored by BioMarin. The program began with insights on the…
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…
The FDA has doubled down on warnings regarding balloon angioplasty. Proposed as a treatment for multiple sclerosis, the surgical use of balloons in the jugular vein has been deemed risky…
At first, 14-year-old Alec Hebblethwaite and his family thought he kept choking on his food due to eating too quickly or talking mid-bite, yet, after some time they learned he…
According to an article from The Daily Herald, "The Big Sick" was Kumail Nanjiani's first feature film. Released in 2017, the movie received widespread praise from critics. The story was…
According to an article from Nephrology News and Issues, medical experts are calling for new treatments for chronic kidney disease that will allow patients to continue working. Although treatments for…
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 CBC News, doctors are beginning to research the mystery behind the unusually high prevalence of multiple sclerosis among the people of Saskatchewan in Canada. To…
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…
Do you know the symptoms of ovarian cancer? If someone asked you to list the symptoms right now, could you? If you were experiencing symptoms of ovarian cancer yourself, would…
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…
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