Tag: Non-Profit

A total of 11 posts are filed under Non-Profit
Rare Patient Starts Card Project for Hospitalized Kids
SOURCE Jen Rubino knows how it feels to be sick and in the hospital at a young age. The 22-year-old was diagnosed with a rare childhood bone… Continue Reading
RARECast: Non-Profit Drug Company Seeks to Advance Rare Disease Therapies
  The high cost of drug development and the small populations for individual rare diseases can make it difficult to attract drug companies… Continue Reading
Waves of Impact – Making a Difference One Wave At A Time
Sun, Sand, Surf and Sam!  Several years ago, I had seen news stories about surf camps for children with autism. I even researched them on… Continue Reading
Families look to orphan drug development at University of Minnesota
Orphan diseases affect 25 million people in the United States. By Taylor Selcke, MN Daily.com For Michael Zimanske, years of holidays and… Continue Reading
National Institutes of Health news that caught my eye this week.
Here are a few NIH related items that Children’s Rare Disease Network folks might find interesting. 1. Share your health experiences with… Continue Reading
Save the Date! Conferences of interest to parent advocates!
Here are some upcoming conferences that parent advocates and advocacy groups might be interested in: Gov 2.0 Expo in Washington, DC on… Continue Reading
Nominate Your Rock Star of Science!
Geoffrey Beene Gives Back®’s hip new campaign, “Rock Stars of Science” (a.k.a Rock S.O.S) is making its mark, and The Children’s… Continue Reading

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