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Get Involved

A total of 31 posts are filed under Get Involved
Rare Disease Day Roundup: What’s Happening in Your Neighborhood?
Dewey Marino from San Diego, California wrote to inform us about a golf tournament taking place on November 25th to benefit the DDX3X… Continue Reading
IPPF Research Grant Program Now Calling for Applicants
Organization: International Pemphigus & Pemphigoid Foundation Submitted by: Marc Yale The International Pemphigus and Pemphigoid Foundation… Continue Reading
‘Engaging your Community for Fundraising’ Workshop By Findacure
As part of Findacure’s training series for small rare disease patient groups, our next workshop will focus on the topic of community… Continue Reading
Guide to Donating Blood: What to Know Before You Go |
Thanks to for sharing this piece. Donating blood can be a scary thought. The idea of the needle alone might make you squirm and… Continue Reading
Vertex Announces New Scholarship Contest, Ready to Accept Submissions
Vertex Pharmaceuticals has announced the launch of “All In for CF Scholarship,” a new program for patients with CF and/or their family… Continue Reading
EveryLife Foundation: Webinar on Rare Disease Week on Capitol Hill to be Held on December 7th
You can play a role in educating the new Members of the House and Senate next year on the impact of rare disease in their communities by… Continue Reading
First Annual SYNGAP1 Golf Classic and Silent Auction
Bridge the Gap – SYNGAP Education and Research Foundation (501(c) 3) is a non-profit organization whose mission is to serve, educate, and… Continue Reading
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