Newborn Screening: The HCP Perspective on the Importance of Confirmatory Testing and Collaboration “It is from the efforts of the state NBS programs, metabolic centers across the country and each community that over 3.7 million babies are screened in the US every year. Through this process we find that “rare diseases” are indeed not so rare, as around 1 in 700 newborns are found to be affected by one of them.” Read more >

A Cure In Sight, in partnership with the UCSF Ocular Oncology Center and NORD, Launches Landmark Ocular Melanoma Natural History Study “Research study is open to participants worldwide to advance understanding and treatments for rare disease causing ocular melanoma.” Read more >

Voices of Rare Cancer: Jan’s Story “Some days are tough. Super tough. The one thing that many cholangiocarcinoma warriors wish people knew is that just because we “look” good…doesn’t mean we “feel” good. ” Read more >