Events Calendar

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. There will be a kickoff the evening of June 18 with breakout sessions for families and individuals with MPS or ML. Learn more

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 from the speakers outlined in the agenda. All presentations will be in English with subtitles available in Spanish, Italian, French, German, Russian and Japanese. Learn […]

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 and to foster relationships within the community. Learn more

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 of GSD. The focus of these conferences is meeting other people and families affected by GSD, gaining a better understanding of the GSDs and their […]

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 threat it poses to the health and safety of the rare disease community, they replaced this highly anticipated event with the Global Genes LIVE! A […]

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 five sessions you will learn how to facilitate a pilot study, build coalitions, navigate the recommended uniform screening panel (RUSP) nomination process, and prepare infrastructure […]

Details coming soon!

Details coming soon!

The Community Congress is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. The Congress is a strategic advisory council, providing advice and insight on urgent policy issues and EveryLife Foundation programs and initiatives. It is comprised of four working groups that work on self-selected projects to advance […]

February 1 is Cerebral Creatine Deficiency Syndrome (CCDS) Awareness Day! Find out how you can celebrate this day and help spread awareness of CCDS in your community. Learn more.