Tag: Rare Disease

A total of 350 posts are filed under Rare Disease
Advice From RARE Moms- A Supportive Response to SickKids Foundation’s “Strong Mom” Video
A heart-wrenching video created by the SickKids Foundation took over social media earlier this month. The short commercial showed a series… Continue Reading
Emergency Room Chaos: 8 Relatable Moments You Know All Too Well
Many rare disease patients feel overwhelmed by the all-too-common emergency room visit that ends in misunderstanding.  In response to this… Continue Reading
How Isolation Impacts Those Suffering With Rare Disease
by Daniella Koren, for MediaPost There’s little in life as jarring as being diagnosed with a serious disease like cancer or diabetes; the… Continue Reading
Pitt Hopkins Awareness Day Coming September 18th
Organization: Pitt Hopkins Research Foundation Submitted by: Jessica Fletcher Sunday, September 18th marks our 4th annual International Pitt… Continue Reading
Celebrate Your Victory – the 21st Century Cures Act Passes the House!
Rare disease patient advocates have reason to celebrate today as the House of Representatives passed H.R. 6/the 21st Century Cures by a vote… Continue Reading
Five Ways to Respond to “How Are You Feeling?” When You Have a Rare Disease
When you’re having an off day because of your rare disease (and lets face it: is there ever really an “on” day?) it can be hard to… Continue Reading
Sweatt Lab At UAB Recieves $1.8 Million Grant to Study Pitt Hopkins
Organization: Pitt Hopkins Research Foundation July 7, 2014 — Dr. J. David Sweatt, Professor and Chairman of the Department of… Continue Reading