To address the special needs of those developing treatments for rare diseases, NORD has created a Natural Histories Patient Registry Platform, with extensive input from FDA and NIH. The first disease-specific registry was launched in the summer of 2014 with the VHL Alliance.
In 2015, NORD was awarded with a $250,000 grant to develop more registries to support better understanding of rare diseases and the research and drug development processes. Twenty rare disease patient groups were chosen in 2016 to work with NORD on the development of registries for their patient communities.
Learn how you can support and benefit from this groundbreaking initiative by contacting firstname.lastname@example.org.