EveryLife Foundation Community Congress Annual Meeting
Washington, D.C. DCThe 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 […]
CCDS Awareness Day
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.
International Angelman Day
The purpose of International Angelman Day is to raise awareness of the condition, mobilize people to action, encourage fundraising, promote research and educational resources, and remember those people with Angelman who are no longer with us. Learn more
Rare Disease Day
Rare Disease Day takes place on the last day of February every year. The main objective of the day is to raise awareness among decisionmakers and the general public about rare diseases and their impact on the lives of people affected. Learn more
MitoAction FAOD Monthly Support Call
Join MitoAction and call host, FAOD Mom Stephanie Harry, on the second Thursday of each month for a support call for families affected by fatty acid oxidation disorders (FAOD). This call is a place where you can openly chat about the joys, challenges, and questions that arise from living with FAOD. Register
2022 MDA Clinical & Scientific Conference
Orlando, FLThe 2022 MDA Virtual Clinical & Scientific Conference will take place March 13-16, in a hybrid environment, which will include scheduled live-broadcast sessions, on-demand videos, networking sessions, exhibits, and poster sessions. Learn more
Advocacy Webinar and Virtual Capitol Hill Registration Kickoff
More details coming soon. Learn more
Raleigh Run for Rare
Raleigh, NCJoin the National MPS Society at Dorothea Dix Park on March 26th for the Raleigh Run for Rare! This event will feature a 5K run, 1 mile walk, and post-run family picnic at Harvey Hill. Register
Aging with XLH Group Meeting
More details coming soon. Learn more
Adolescent/Young Adult Group Meeting
More details coming soon. Learn more
Napa MPS Race for a Cure
Napa, CAJoin the National MPS Society in Napa, California for the 6th Annual Napa MPS Race for a Cure on May 1, 2022. This event will be held at Kennedy Park and will feature a 5K run, 1 mile walk, family picnic, raffle, and silent auction! Register
