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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...
Luca Catalano Gonzaga’s project: The Witness Image: The Story of Alex
Witness Image: The Story of Alex Living in shadows: A child’s rare disorder By Ashley Strickland, CNN CNN: Living in Shadows: A child’s rare disorder (CNN) Alex Gentile has...
“Orphan Drugs: A Global Crusade” by Abbey S. Meyers
As the retired founder and Past-President of NORD, I want to let you know that my new book, “Orphan Drugs: A Global Crusade”, has been published. The electronic version...
Oskar Szajnuk’s Skin Last Night
I was just curious if anyone had thoughts or advice on Oskar’s two different rashes last night. Oskar’s skin turns red a lot but not like this… He...
Lucy home from ER. Abdominal Migraines with Visual Complications due to Autonomic Neuropathy
Lucy Szajnuk is four years old and lives in pain every single day. I was glad to hear that she did not have papilledema like Ava did in...
Headed to ER with Lucy Szajnuk
Lucy has had stomach pain for a week now. We just figured it was her normal stomach pain. However, she’s begging for a scope. She’s been screaming crying...