The Pulmonary Fibrosis Warriors (PF Warriors) and monARC Bionetworks teamed up today to host a Facebook Live video, sharing important information about how patients can become more involved in research…
The Associated Professional Sleep Societies held their 31st annual meeting in Boston June 3rd through 7th. You can read more about Sleep 2017 by clicking here. Among other discussions was cataplexy.…
Biohaven Pharmaceutical Holding Company Ltd. announced at the end of last month that the company has completed enrollment in its Phase 3 clinical trial of trigriluzole in spinocerebellar ataxia (SCA)…
In April, Prometic Life Sciences Inc. announced it would be submitting a Biologics License Application to the FDA for treatment of hypoplasminogenemia. The company's therapy has already been listed with Orphan…
The goal of the Alpha-1 Foundation is ultimately to find a cure for Alpha-1 Antitrypsin Deficiency (A1AD). But along the way, they are also a resource for patients, families, and…
Gastroparesis causes paralysis of the stomach. It basically means the stomach doesn’t understand its job, and can’t digest food properly. This causes extreme discomfort (to say the least) for gastroparesis…
Imagine your father has just suffered a heart attack and must undergo open-heart surgery in order to repair the damage... Picture your baby niece or nephew was born with a…
Andrew Belliveau started the Pie Face Challenge in July of 2016 in order to raise awareness for gastroparesis and stimulate accelerated research for the disease. He took inspiration from the…
The Governor of Vermont made an official written proclamation March 3, 2017. He declared March as Bleeding Disorders Awareness Month, the state's first official observation of the cause. With this…
Achondroplasia is one of those illnesses that you can’t hide. And everyone is going to have a different responses to it. Some ignore it, some will ask questions, and others…
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