New Request for Applications for FDA Rare Neurodegenerative Disease Grant Program

Deadline to submit applications: May 4, 2023 The U.S. Food and Drug Administration (FDA) announced a new funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program to support efficient natural history studies and/or biomarker studies that fill unmet needs for rare neurodegenerative diseases for children and adults. Through the support of prospective natural history and/or biomarker studies with…

Applications for Duchenne Centers Accreditation now open

World Duchenne Organization is thrilled to announce that the applications for Duchenne Centers Accreditation are now open. The Accredited Duchenne Centers Program is designed to achieve worldwide uniform and up-to-date care for everyone living with Duchenne muscular dystrophy. Accredited Duchenne Centers provide comprehensive care according to the international care considerations and consensus guidelines. The program…

The 3rd International Conference on Rare Diseases Greek Chapter: Presentations Available

The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG), “95” Rare Alliance Greece and Boussias and supported by EJP RD took place on February 28 & March 1, 2023. The presentations are now available here: https://www.rarediseases-conference.com/history/presentations-2023/ Following the success of the previous two years and having advanced the policy agenda on…