Just this morning, the family of American hero and political icon John McCain announced via a statement he will cease treatment for the aggressive and rare form of brain cancer,…
No one likes to be judged. However, during the many years that I've been involved with rare diseases families, I've learned that some people are very quick to judge parents…
According to a story from thesun.co.uk, Jade Baldwin, 35 had been dealing with mysterious itchiness for years before she sought medical attention for it. While her legs were itchy, there…
According to a story from Newswise, a team of scientists from the St. Jude's Children's Research Hospital have been hard a work conducting an in-depth analysis of a pediatric solid…
This article contains a summary of the first episode of Afflicted A new series on Netflix called Afflicted explores chronic illness. It follows seven people as they talk about their…
According to a report by Newswise, a new form of gene therapy has been developed which may slow or prevent retinitis pigmentosa. Researchers funded by the National Eye Institute (NEI)…
According to the Tampa Bay Times, Aaron McQ did not want to die. He knew, however, with his disease he would inevitably have to. The 50-year-old man from Seattle…
According to The Times of Israel, a group of researchers believe they have found the origin of what could lead to a treatment for amyotrophic lateral sclerosis. Given the debilitating effect…
According to a story by The Japan Times, Masatane Muto relies on a power wheelchair to move around. He is hardly in control of his own body and requires help…
The Alagille Syndrome Alliance has launched its first ever awareness ribbon in support of the Alagille syndrome (ALGS) community! The multi-colored awareness ribbon is meant to represent the complex and uniquely…
According to a story from Charcot-Marie-Tooth News, a recent study has managed to identify new clinical evaluations that will allow doctors to more effectively monitor the condition of patients with…
Erika Baker and her family have been dealing with the impact of adrenoleukodystrophy (ALD) for generations. The disease has impacted several of her family members, including her uncle, her cousins,…
According to a story from Morningstar, the company Alexion Pharmaceuticals recently announced that the U.S. Food and Drug Administration (FDA) has agreed to review their Biologics Licensing Application for their…
According to a story from Business Wire, the biopharmaceutical company Onspira Therapeutics recently announced that its investigational therapy OSP-101 was recently granted Orphan Drug designation by the US Food and…
The US Food and Drug Administration (FDA) has released a statement outlining its plans to promote patient voices in the development and regulation of medical products. You can find more…
According to a story from USA Today, despite numerous warning letters sent from the US Food and Drug Administration to the offices of doctors and other medical professionals across the…
Researchers have found that an artificial intelligence (AI) system is able to recommend patient referrals for over fifty eye conditions as accurately as world-leading doctors. The project is part of…
According to a story from Deseret News, sarcoma patients at the Huntsman Cancer Institute are planting sunflowers as a way to spread awareness about sarcoma, a rare and aggressive form…
The United States FDA has approved the first generic version of EpiPen and EpiPen Jr (epinephrine). The approval was granted to Teva Pharmaceuticals USA, who will now be able to…
Elmo and friends are here to help! - thanks to the good people of The National Association of Community Health Centers (NACHC)! For those who have never heard of the NACHC,…
On August 16th, 2018, Aretha Franklin, the "Queen of Soul," passed away at age 76. Aretha will be immortalized for generations because of the success of her classic soul ballads…
Gabriel Low, a 17-year-old from Hawaii, just completed a 3,000-mile bike ride across the country. He’s been riding since June 11th when he embarked from Seattle, WA to raise awareness,…
The Beginning My story began in February 2011. On January 10th, 2011, my husband and I were involved in an accident in which we slid off the side of a bridge 10 feet face…
In January-March of 2015, I was the healthiest I’d ever been... or so I thought. I worked out, drank plenty of water, had a great lifestyle and meal plan. In…
Our partner, the MDS Foundation, is sponsoring another free event for patients and caregivers. Event Summary: Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver this…
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