Rare Disease Week in Washington, D.C. is a tremendous experience for those of us personally affected by rare disease. Sure, it is a fantastic opportunity to meet with our legislative representatives to have our voices heard. But there is another just as important, if not more therapeutic, reason … [Read more...] about Sisterhood of the Traveling Advocates
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National Institutes of Health (NIH) Tweet Chat
Mark your calendars! The National Institutes of Health (NIH) is hosting a Tweet Chat on Feb. 21, 2017 from 1-2pm ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D. - NCATS Director Christopher P. Austin, M.D. - NCATS Office of Rare Diseases Research Director Petra Kaufmann, M.D., … [Read more...] about National Institutes of Health (NIH) Tweet Chat
How to Participate in Rare Disease Tweetchats
Those of us in the rare disease community are spread out far and wide, but thanks to social media, we are have robust and informative discussions about topics affecting the rare disease community. Whatever topic you may be interested in, you know that there are others in our community who want to … [Read more...] about How to Participate in Rare Disease Tweetchats
My Passion for Advocacy
One of the most fulfilling things for me since Little Miss Hannah passed away in 2011 was to mentor other patients, families, and organization leaders to create HOPE for their community. I've had the opportunity to work with over 1000 advocates in our rare disease community as well as hundreds of … [Read more...] about My Passion for Advocacy
