Recent Posts
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Angel’s Hands Foundation Goes Above and Beyond
Mark Kristensen and his Angel’s Hands Foundation (AHR) generously donated towards our very own Rare Teen, Hailey Sampsel, for her travel to the three-week Comprehensive Pain Rehabilitation...
Amylynne Santiago Volker launches Nicholas Volker One in a Billion Foundation
Welcome to Nicholas Volker One in a Billion Foundation Mission To inspire the world to improve the quality of life for those with undiagnosed and rare disease...
Andrew Scholte: RUNning for Rare Zebras
Andrew Scholte: “For the past two years I have been partnered with Emma, a member of the Gaucher community for the Running For Rare Team. This year I...
Katie Petersen: Diagnosed but still Undiagnosed
I am unsure where to begin, so much has changed since the last time I’ve posted. I have started college, moved into the dorms and most importantly I...
A Dedicated Rare Disease Platform to Find Answers. Faster.
We have tirelessly searched for answers and have sacrificed nearly everything for us and for our loved ones with a rare or undiagnosed disease to receive the information and...
Senator Hatch: Thank you for your work on the Open Act!
Senator Hatch’s remarks from the hearing yesterday: “This amendment contains the provisions of the Open act, a bill I’m sponsoring with Senator Klobuchar to promote new therapies for...
One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine by Mark Johnson & Kathleen Gallagher
The breathtaking story of a young boy with a never-before-seen disease, and the doctors who take a bold step into the future of medicine to save him—based on...
“Spiritual DNA is perfect”
Holly Ferrin: “It’s been a while since I have put thought and effort into being engaged with #LDSconf – in other words, it’s been a while since I’ve...
Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families
Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....
Rare Mom’s Letter to Hollywood: “Miracles from Heaven”
Dear Hollywood, As a mother of three rare and undiagnosed children and the Co-founder of the Rare & Undiagnosed Network (RUN), thank you for making the movie “Miracles...