From Our Affiliates

Amy Grover

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
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
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
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
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
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
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