From Our Affiliates

Amy Grover

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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… Continue Reading
Mom Creates “Remarkably Rare” Apparel for Daughter with Alagille Syndrome
Our daughter Emmery was born in April of 2013. At birth she was seemingly born happy and healthy with just a slight increase in her… Continue Reading
Looking for Other Patients with Cold Urticaria (Cold Contact Urticaria)
My name is Claire. I live in Cincinnati, OH. I found out i have a disease called Cold Urticaria (CU or Cold Contact Urticaria.) I found out… Continue Reading
Becoming a Mum of a Child with Ebstein’s Anomaly and Double Orifice Mitral Valve
I gave birth to a handsome, long and healthy looking baby boy, he had bright blue eyes and a small amount of blonde hair. He was the son we… Continue Reading

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