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Page 25 of 48

“Spiritual DNA is perfect”

April 3, 2016 11:28 pm

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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...

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Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families

March 25, 2016 4:09 pm

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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....

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Rare Mom’s Letter to Hollywood: “Miracles from Heaven”

March 23, 2016 5:34 pm

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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...

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Luca Catalano Gonzaga’s project: The Witness Image: The Story of Alex

March 23, 2016 2:04 am

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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...

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“Orphan Drugs: A Global Crusade” by Abbey S. Meyers

March 22, 2016 7:17 pm

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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...

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Oskar Szajnuk’s Skin Last Night

March 18, 2016 11:53 pm

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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...

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Lucy home from ER. Abdominal Migraines with Visual Complications due to Autonomic Neuropathy

March 12, 2016 12:21 am

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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...

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Headed to ER with Lucy Szajnuk

March 11, 2016 4:38 pm

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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...

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Rachel Nielsen’s Children’s Hospital of Wisconsin Journey

March 10, 2016 4:02 pm

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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...

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Gina’s “Living in a Diagnostic Odyssey, Times Four”

March 5, 2016 8:36 pm

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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!  ...

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