Archive for March, 2016
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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...
Rachel Nielsen’s Children’s Hospital of Wisconsin Journey
Recently, my parents and I had the opportunity to go to the Children’s Hospital of Wisconsin to see 2 specialists to hopefully get more answers and treatments for...
Gina’s “Living in a Diagnostic Odyssey, Times Four”
Very excited to share my journey through our diagnostic odyssey this week at the Illumina supported Satellite Symposium at the ACMG Annual Clinical Genetics Meeting in Tampa, FL! ...
Annette’s “Born in Fire: Bug’s Story”
When I was asked to share our story at the Utah Rare Symposium, the one where we find out how we created a very unique little person, not...