Undiagnosed Patient Program Advisory Board: Member Bios

Heather Long, U.R. Our Hope

U.R. Our HopeHeather is a co-founder and Director of Advocacy for U.R. Our Hope. In 2006 Heather and her husband Cody lost their son Cal at the age of five to an as yet undiagnosed, potentially rare metabolic disease. Since Cal’s death, Heather has devoted much of her time to advocating for patients suffering from undiagnosed and rare diseases by promoting legislation benefiting those affected by rare and undiagnosed diseases and promoting the creation of a national network for physicians caring for patients with yet-to-be diagnosed conditions.

The intent for the network is to provide physicians with a tool that will allow them to register their undiagnosed case and find other physicians handling similar cases in order to promote real-time collaborations focused on finding a diagnosis and improving the care and outcomes of their patients. The Network will also collect data to facilitate research in order to better describe the types and prevalence of undiagnosed diseases, the length of time for a diagnosis to be rendered, the barriers to diagnosis, reasons for misdiagnosis and to provide information needed to improve access of individuals with undiagnosed diseases to programs, services and treatments.

In 2011 Heather co-authored H.R. 2671 – The CAL Undiagnosed Diseases Research and Collaboration Network Act of 2011 which was proposed in the 112th Congress and re-introduced in the 113th as H.R. 1591 with the same title by Representative John Carter of Texas. Heather also mentors parents of undiagnosed children and is a volunteer patient advocate member of the Global Genes Advocacy Advisory Group for which she contributes her personal experience to help promote public policy, patient and physician education and social awareness of the issues faced by those living with a rare or undiagnosed disease.