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April 21, 2016 11:45 pm
1Amy Peedle updates us on her daughter: Aliyah will be getting both her tubes changed out tomorrow. They are due to be changed in June but because we...
February 9, 2016 6:01 pm
8Aliyah is 14 when she was born she weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...
January 25, 2016 8:54 pm
4Amy Peedle: “Aliyah got something stuck in her esophagus 10 days ago and has not been able to eat anything by mouth, she was able to drink some...
January 12, 2016 6:31 pm
14Amy Peedle: Aliyah was born March 9th, 2001. She weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...
November 11, 2016 7:46 pm
0RUN in the MEDIA LINKS Rare & Undiagnosed Network Provides Advocacy, Networking and Support for Patients and Families Utah Rare Disease Day Recap 2023 Global Genes Patient Advocacy...
May 14, 2016 5:16 am
8Time for some Rare FUN today! This is an intimate event for our Rare and Undiagnosed families to share their diagnostic odyssey and to network about doctors, treatments...
April 29, 2016 3:54 am
5Even though Aliyah is very sick. We are strong together. Aliyah is a fighter. I am a fighter. She will persevere. I will persevere. We are so very blessed. We...
March 25, 2016 4:09 pm
5Thank 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....
March 23, 2016 5:34 pm
9Dear 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...
January 24, 2016 8:46 pm
6The RARE TEEN PHOTO SHOOT was a HUGE success! Season Atwater, Aware of Angels, is such a talented photographer! Thank you to Angel Benson, Maddie Benson, Julie Jackson, Kristen Packard, Rebecca...