May the fourth be with you! This week we're spotlighting four patient stories: one about a father whose daughter has Sanfilippo syndrome, one about losing your spouse to CF, the…
According to a story from the Rare Disease Report, the results of a recent survey questionnaire indicate that communicating with other rare disease patients can cause a significant improvement in…
According to a story from Newswise, neurosurgeons at UC San Diego Health can now provide patients with an auditory brainstem implant (ABI) that can preserve some degree of hearing in…
A condition called XLHED that was thought to be incurable has been treated, and a paper describing the procedure, which can be found here, was released on the 26th April…
Matt Millen played linebacker in the NFL for 12 seasons. He was a tough competitor and won 3 Super Bowl rings. For eight years, he was the General Manager of…
Narcolepsy is a rare disease subject to many misperceptions and false assumptions. All of that misinformation belies the fact that narcolepsy is a serious neurological disorder, with symptoms that can…
According to a story from bioportfolio.com, a recent study has demonstrated the effectiveness of Trelegy Ellipta, a unique three component combination treatment, in reducing the effects of chronic obstructive pulmonary…
Every year, May 20th is celebrated as International Clinical Trials Day. On this day organizations that are involved in the fields of science and medicine hold events to promote education…
Back in February, we covered the $1,000,000 IPF Catalyst Challenge. Announced in April, innovators from around the world submitted meaningful solutions to improve the quality of life of those living with…
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