Diagnosed at the age of 10 with classical homocystinuria (HCU), Danae’ Bartke struggled with the prescribed treatment of the low-protein diet and medical formula. At 24 years old, she suffered a blood clot, which was the catalyst that she needed to get back on track and seek community support. She first connected with the PKU community. After feeling inspired by the larger low-protein community, in 2016, she co-founded HCU Network America. She speaks openly about dealing with her history of symptoms and advocates for universal newborn screening and access to medical nutrition, in hopes that others will receive a timely diagnosis and treatment.
New Name, Same Commitment to Rare Diseases
The EveryLife Foundation for Rare Diseases has become The RARE Foundation! Read more about our new brand and how it unifies our advocacy work on behalf of the rare disease community.
