According to a story from PressReleasePoint, a new partnership has developed to generate artificial intelligence technology that will help diagnose people with a variety of rare diseases. The partnership consists…
According to a story from fiercebiotech.com, the gene therapy startup Generation Bio managed to fundraise $100 million in a little over a month. In its prior series A round of…
Ellie White is everything you would want in an 18-month-old daughter, fun, playful, and full of life-- yet not too long ago her family discovered she had a rare disease,…
Just yesterday, the incredibly successful actor Irrfan Khan, announced on twitter that he just found out he has a rare disease, reported The Guardian. Khan has appeared in over 100…
Macey Brietenback continues to defy all odds. Originally reported by CBS Baltimore, the teenager lives with a condition that prevents her from digesting food. Even though it has given her…
Happy Friday, Patient Worthians! Today, we're highlighting a story about the donors who sacrifice their kidneys for rare patients, an update on CF research, and an exciting orphan drug designation.…
According to a story from Science Daily, researchers at the University of Michigan have discovered why it is possible for basal cell carcinomas, a common form of skin cancer, to…
For so many of us, a good night's sleep is a refuge; from our long hectic days, from our piling problems, or even from the stresses of managing our rare…
When I was a young mom, I was not naïve; I knew that life has it ups and downs. I expected a Merry-Go-Round, and got a Roller-Coaster. I thought that…
33 rare disease organizations across the country have teamed up for $1 million fundraising goal during the months of February and March to fund research and support patients, in honor…
Adrenoleukodystrophy is a rare hereditary condition which affects the myelin sheath and the ability of the body to process a type of fatty acids. The most damaging form primarily affects…
UCLA conducted a new study that looked at patients with claustrophobia and attempted a shortened MRA scan. They hoped to obtain the same quality of images that the current, longer…
Haley Hayes is a normal pre-teen, yet she suffers from Pompe disease. Pompe disease is a genetic condition, which causes muscle and organ impairment. Early diagnosis and enzyme replacement therapy…
The final day of Rare Disease Week took place at the NIH Clinical Center last Thursday. Admission to the NIH was free, and participants had the chance to tour the…
Life for 27-year-old Medical Bio Science graduate, Tate Nova Scanlon, has never been easy. As originally reported by The Lincolnite, Tate has been battling aggressive symptoms caused by adrenal…
A new medical educational platform called the HealthVoyager has been released and is now being utilized following a collaboration with the Boston Children's Hospital and Klick Health, reports PR News…
According to a story from unmultimedia.org, a recent report has revealed that there are twenty countries across the world that still discriminate against people with Hansen's disease, also known as…
According to a story from Politico, the two legislative bodies of the Virginia General Assembly, the House of Delegates and the Senate of Virginia, passed vastly different budgets last week,…
United in Progress is the tag line for a unique collaborative effort to speed progress in identifying, understanding and treating hemophilia: My Life Our Future. Increasingly in the area of rare…
People living with sickle cell disease should have a new option for treatment in the not-too-distant future. In addition to the blood transfusions and bone marrow transplants from healthy donors, a…
Happy Rare Disease Week, Patient Worthians! As we wind up after a week of celebrating the rare patient community, support networks, and advocacy, we want to highlight four rare disease…
Last month, 125 rare disease patient organizations sent a letter to Medicaid directors from individual states highlighting the importance of Medicaid access for rare disease patients. "As organizations representing millions…
According to a story from the National Organization for Rare Disorders, patient advocacy organizations are joining forces to send letters to Medicaid directors across the USA to advocate for the…
No couple wishes for a high risk pregnancy and a premature birth. But according to a story on The Today Show's website, new mother, Mallory Brinson, was grateful for…
According to a story from BBC, a former employer is paying for a woman's cancer treatment. 74 year old Pamela Stubberfield of Oxfordshire was diagnosed with mesothelioma. More than 80…
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