The Immune Deficiency Foundation (IDF) is a fabulous resource for anyone living with primary immunodeficiencies (PI). On May 12 at 8 PM Eastern Time, the IDF will host an informative…
Continuing medical education courses (or CMEs) are educational events designed to keep medical professionals up to date on the latest information in their fields. These professionals earn credits toward their ongoing…
As my colleague James Earnest Cassady covered earlier this week, Wake Up Narcolepsy, or WUN, has been raising funds for narcolepsy research in a pretty spectacular way: They have a team…
Mark your calendars: The Global Lyme Alliance is hosting the 2016 Time for Lyme Gala on April 2, 2016. Where: Hyatt Regency Greenwich When: April 2, 2016, 6:30 pm-12 am (Midnight)…
Kids diagnosed with EB, or Epidermolysis Bullosa, have skin as fragile as a butterfly’s wings. DEBRA stands for Dystrophic Epidermolysis Bullosa Research Association, the patients association for this fragile skin disorder which…
I first wrote about Julie Flygare back in 2015 and it’s awesome to hear that she’s as committed as ever to advancing the cause of raising awareness about narcolepsy. I got the recent scoop…
Come one, come all! Well, mainly those who you live with narcolepsy... The annual Narcolepsy Network (NN) Conference is in the works, and this year, Judith Owens, MD, MPH, Associate in Neurology (and…
It’s a terrible thing to lose someone. There’s no getting around that. But some people can take loss and find new purpose. For Eric Marder’s family, that purpose became Eric’s…
Acromegaly.care will be hosting an acromegaly patient webinar on Wednesday, March 16 from 12:00 – 12:30 p.m. EST. The webinar will feature acromegaly patient Casey, and research coordinator Lisa Mitchell from…
Listen up, people! Are you living with a neurological disease or condition? Do you want to inspire people by sharing your personal story on video? If so, the American Academy…
We know that the cost of medical treatment, even with great insurance, is high. Transportation, parking, inability to work full-time because you are taking care of a very ill family…
Franciscan Institute for Science and Health in Steubenville, Ohio sponsors research on metabolic defects which can lead to rare mitochondrial related seizure disorders. While this is a limited rare disease program- if…
Ambry Genetics is a service provider to research and development physicians and patients. they've been around since 1999 and have become an authority and trusted source in genetic counseling. Ambry…
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