Events Calendar

Rare Disease Legislative Advocates (RDLA) staff will organize virtual meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The RDLA team will also help prepare […]

Join the National MPS Society for an evening of intrigue and philanthropy at the historic Corinthian Yacht Club in Tiburon, CA, founded in 1886. This event will feature silent and […]

Mark your calendars to join NMPSS on June 19-20 and 26-27 for their 35th Annual Family Conference! The conference will be held virtually, with sessions taking place across four days. […]

The CDKL5 Alliance’s International Virtual Family Conference will be ‘a la carte,’ meaning participants will be able to visit their website on June 19 or later and view pre-recorded presentations […]

Rare Disease Week on Capitol Hill, hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is designed to educate and activate advocates […]

Save the date! More information to come. Learn more

Save the date! More information to come. Learn more

The Association for Glycogen Storage Disease holds a family/medical conference each year for those affected with GSD, their families, and medical professionals involved in treatment or research of any type […]

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Due to the COVID-19 pandemic, and the […]

The EveryLife Foundation for Rare Diseases and Expecting Health at Genetic Alliance invite you to a virtual five-part training series designed to educate and engage newborn screening stakeholders. Throughout the […]

Details coming soon!

Details coming soon!