Taking action on genetic prion disease

Thank you for your interest in the "Taking action on genetic prion disease" meeting on Saturday, March 31, 2018 at the Broad Institute.

This meeting is for individuals impacted by genetic prion disease, and will be co-hosted by Sonia Vallabh, Eric Minikel and Victoria Costello. Sonia and her husband Eric changed careers to work on treatments for prion disease, and established the Prions@Broad research program, after learning in 2011 that Sonia had inherited a genetic prion disease mutation. Victoria is a genetic counselor with a personal connection to prion disease and a special interest in raising awareness and funding for its study and prevention.

This meeting aims to gather individuals impacted by genetic prion disease. We will share some recent updates in therapeutic research, the path for advancing toward prevention of genetic prion disease, and prospects for getting involved for those who are interested. We will also provide information on topics of interest to the community, including an at-risk perspective on life insurance qualification, and a local take on in-vitro fertilization with pre-implantation genetic diagnosis (IVF-PGD).

Examples of genetic prion disease include genetic Creutzfeldt-Jakob disease (CJD), fatal familial insomnia (FFI) and Gerstmann Straussler Scheinker syndrome (GSS). If you are impacted by genetic prion disease and would like to attend, please click "register" below to complete the registration form. Please be sure to register each person in your group that will be attending. Breakfast and lunch will be provided.

Please feel free reach out to Sonia Vallabh at svallabh@broadinstitute.org with any questions! We are excited to share our progress, and to have the opportunity to connect with you.