Rett Community Researchers:

We would like to point out two announcements from the past two week’s NIH guide. The Office of Orphan Products Development (OPD) of the US Food and Drug Administration (FDA) has released an RFA for clinical studies on safety and/or effectiveness of Orphan Products. The second is a request from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the National Human Genome Research Institute (NHGRI) for a U19 Research Program – Cooperative Agreement applications that propose to explore the implications, challenges and opportunities associated with the possible use of genomic sequence information in the newborn period.

Clinical Studies of Safety and Effectiveness of Orphan Products Research Project Grant (R01) (RFA-FD-13-001) Food and Drug Administration Application Receipt Date(s): February 6, 2013; February 5, 2014: Resubmission Due Date(s): October 15, 2013 and October 15, 2014

Genomic Sequencing and Newborn Screening Disorders (U19) (RFA-HD-13-010) Eunice Kennedy Shriver National Institute of Child Health and Human Development National Human Genome Research Institute Application Receipt Date(s): November 19, 2012

A note from the families who attended Family Conference at the 7th World Rett Syndrome Congress
to all Rett syndrome researchers.