As shared in a press release by the American Academy of Neurology; the medical community had taken note of the rare brain pressure disorder idiopathic intracranial hypertension (IIH) when they…
Michael Freeland spent most of his life trying his best not to think about his incredibly rare disorder. Not only was it incredibly painful, but the symptoms were debilitating, and…
For some parents, learning your child is using cannabis products might cause trouble or upset. Joanne Griffiths is troubled and upset because her son might lose his supply. According to…
As reported in Charcot Marie Tooth News; researchers have devised a new measure of quality of life for youth with Charcot-Marie-Tooth disease. While of course, researchers could assess the youth’s…
As published in the NIH; the NIH is encouraging people with chronic kidney disease (CKD) to consider following a careful diet. They’re not seeking a summer body though. The rare…
In a press release shared at UEG week Virtual 2020, researchers shared a new study conducted over nearly two decades which found that people who’d had asthma or an allergy…
As reported in Newswise; 40% of people with primary progressive aphasia, a rare neurological disorder causing progressive language loss, also have underlying Alzheimer’s disease. However, while Alzheimer’s disease is characterized…
As reported in WTNH; in Stafford Springs, CN, the Pokorny family was rudely awakened to the world of rare diseases when their new daughter Olivia was born with spinal muscular…
As reported in MSN, Duane Zingale explained that one aspect of being born with Treacher Collins syndrome is that you’re extremely memorable. Duane was born without ears or cheekbones. He…
As reported in EMJ Reviews; the novel coronavirus has gripped the world— fueling a wave of medical innovation and prioritization. However, the excess of need has made the normal flow…
According to EMJ, findings from an analysis spanning 20 years has found that weight loss surgery used to address obesity also significantly lowers a person's risk of developing pancreatic cancer.…
As reported in EMJ Reviews, the world is on alert, being told to wash their hands and keep distance amidst the COVID-19 pandemic. However, patients with inflammatory bowel disease (IBD)…
25 year old Tylia Flores wrote on her blog that as a person with cerebral palsy, there are a lot of not so thoughtful ‘compliments’ that may not be interpreted…
As reported in PR NewsWire; in an effort to help the entirety of the sickle cell disease community, Emmaus Life Sciences, Inc has announced a program that will provide their…
As reported in Medical Xpress; a tick-borne disease, often mistaken for the more common Lyme disease, has begun to spread more rapidly outside of the typical regions in the northeastern…
As originally reported in the BBC; In Leyland, Lancashire, Mother Melanie Moffatt describes feeling miserable on Christmas. She was spending it alone with her 10 year old daughter Matilda who…
As reported in AP News, Bradford and Bryan Manning broke into a market in the fashion industry often overlooked: the blind. The glitz of fast fashion doesn’t work. So what are…
Adam Settle, is an artist, football lover, and the youngest of eight. He’s also the subject of the new book, No Day Wasted: The Adam Settle Story, by Susan F. Stallings.…
As reported in Warta Saya; for kids with cystic fibrosis (CF), a daily exercise needed to clear the lungs of the disease's characteristic build-up of mucus can feel long and…
In a press release from the FDA; the FDA has new recommendations for a common mercury-based filling, dental amalgams. While the mercury in the tooth treatment isn't significant enough to…
In a press release by the Parkinson’s Foundation, the non-profit has announced an exciting collaboration with Sanofi, the global pharmaceutical company, which will dedicated $1 million to the nonprofit to…
According Newswise, in a new study first published in Gastroenterology, researchers at Cedars-Sinai have identified a set of genes, made up of rare genetic deviations and more common genetic patterns,…
As reported in Medical Xpress; Fight for Sight, a charity in the UK dedicated to vision, has an exciting announcement for people with macular diseases: they have just granted funding…
As reported in the BBC; Aaron Bradley is concerned that returning to work will endanger his son’s health. This follows the Scottish governments decision to move his toddler off of…
As reported by the Human Rights Watch; in Mozambique, a grassroots organization to support people with albinism is using murals to spread awareness and a positive image of the disease.…
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