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…
Creative parenting. I find such inspiration when I hear about parents digging deep to adapt surroundings (or life) so their kids can deal with it better. A WBTV social media…
My name is Alan. I cross many borders as a person with a rare disease. These borders are physical, geographical and psychological. Crossing so many borders has earned me the…
I have lived with chronic pain from a neurological movement disorder called dystonia for nearly 20 years. It reminds me of the bully who picks on kids in the schoolyard…
Ovarian cancer diagnosis is extremely rare in women under the age of 20, yet Kronenwetter teenager, Khiana Bradsaw, was diagnosed at the young age of 13-years-old, reports ABC 9 News…
According to a story from Newswise, a recent study shows that Merkel cell carcinoma, which historically has affected only a few thousand people per year, is becoming more prevalent, especially…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
Meisyn Ellison, a 13-year-old in Utah, adopted from China, battles the debilitating effects of her rare disease and now seeks to find her biological parents in hopes to give doctors…
Jahkee Johnson, a 16-year-old from Cedar Grove High School, is exceptional and accomplished for many reasons, beyond the fact that he tackles challenges and goal without the help of legs,…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
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