From Our Affiliates

Amy Grover

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The Story of Sam’s Rare Diagnosis
Until February 2013, our two-year-old son, Sam, was a completely normal child.  There were no problems during my pregnancy or his… Continue Reading
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Sophia With Rhizomelic Chondrodysplasia Punctata (RCDP) Needs Your Help
Rhizomelic Chondrodysplasia Punctata (RCDP) is a rare terminal form of dwarfism. There are less then 100 diagnosed children in the world. At… Continue Reading
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Ukraine Boy Experiences Heart Failure
Baby Bogdan was born on 09.12.2013 in Kiev, Ukraine. Eight hours after birth, he was moved into intensive care where cardiologist… Continue Reading
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Helpless Reality: Finding Answers for My Son’s Rare Portal Hypertension
We never felt so helpless as we did back in July 2011, when Patrick began his given journey at a year old. As a baby, we never realized… Continue Reading
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Piper’s Story: Premature Birth Reveals Metopic Craniosynostosis, Chromosomal Deletion
This is a story of a very special little girl. It was at my 20 week ultra sound  that my boyfriend and I  found out we were going to be… Continue Reading
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Congenital Hepatic Fibrosis: Barbara’s Story
by Barbara Ainsley I can only rember little things when I first got my diagnosis of Congenital Hepatic Fibrosis with ARPKD. I was very… Continue Reading
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My Name is Jennifer and I Have Stiff Person Syndrome (SPS)
My name is Jennifer and I have Stiff Person Syndrome (SPS), a disease so rare that it affects less than one person per million.  My… Continue Reading