Patient Advocacy at NIH Registry/Repository meeting

Bethesda, MD – The ICF was present at the 2010 NIH Advancing Rare Disease Research meeting titled: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data.  ICF President Matthew Lewis joined ICF Director Dr. David Goldfarb (NYU, Saint Vincent’s Hospital) and research coordinator Frank Modersitzki to gather information and best practices to assist in the establishment of the new Cystinuria Registry effort led by Dr. Goldfarb.