From Our Affiliates

Amy Grover

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
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The Face of Bartter Syndrome: Ethan’s Cure
Imagine knowing something is wrong with your baby, but medical professionals cannot provide a diagnosis. Frustrated and scared, you spend… Continue Reading
Retrophin and Harmony 4 Hope Turn Up the Volume for Rare Disease this ‘Rocktober’
Harmony 4 Hope proudly welcomes Retrophin to our Play This Forward Campaign during the month of October. Harmony 4 Hope, a Chicago based… Continue Reading
Allison’s Rare Breathing Disorder: Taking Life One Breathless Night at a Time
I have a rare breathing disorder called Congenital Central Hypoventilation Syndrome (CCHS). An hour after I was born I stopped breathing.… Continue Reading
Recognize Rare, Son Starts Company to Benefit Mom and Other Rare Patients
My name is Jacob Shelt. I’m 19 years-old and a student at Bowling Green State University. In 2012, towards the end of my senior year of… Continue Reading