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…
CNN published this incredibly story about love and bravery earlier this month - and it's worth a second look. Sophia Weaver was born with deformities to her hands, feet, and…
Ever since New Brunswick 3-year-old, Zaccari, was born, they knew he needed a new kidney. CTV News Atlantic originally reported that Zaccari was born with congenital nephrotic syndrome, a rare…
These days it’s difficult to walk through a public gathering and not see a "Keep Calm and Carry On" T-shirt, poster, coffee mug, or bumper sticker. As a catchphrase originally…
For the longest of time, written wills were the go-to method for granting a patients end-of-life wishes, yet now videos are becoming more prominently used, originally reported by Times Herald-Record. Today…
Last year, then sixteen-year-old Joshua Martineau who has Kabuki syndrome and Tourette syndrome, had a challenging experience at his local Cineplex. According to ChCh, Joshua was excited to celebrate his birthday. He…
It's no longer Valentines Day, but we're still sending love to the rare patient community! It's been an exciting week for Hemophilia B patients waiting for a new treatment! We…
February is Turner Syndrome awareness month! Turner Syndrome is a chromosomal condition that affects approximately one in every 2,000 women. The condition occurs when a woman lacks all or part…
This Wednesday, the last day of February is internationally-recognized Rare Disease Day - a day when we realize that in fact - rare diseases are not so rare. There are…
According to a story from the Sun Herald, one in ten Mississippi residents suffer from one of the 7,000 diseases that are considered 'rare' in the United States. In the…
The Mercury News originally reported that a new cannabis based drug found success with reducing epileptic episodes in patients with Lennox-Gastaut Syndrome. They hope to have the drug available on…
According to a story from CNNMoney, Scott Gottlieb, the current commissioner of the US Food and Drug Administration (FDA), said that he plans to curtail high drug prices and go…
Talk show titan Wendy Williams (How you doin'?!) announced at the top of her daily talk show that she has been diagnosed with the rare disease Graves’ disease and hyperthyroidism. Graves' disease…
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