RARE Patient Advocacy (un)Summit
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 […]
Newborn Screening Bootcamp
Sacramento, CA Sacramento, CAThe 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 […]
Rare Disease Scientific Workshop
Washington, D.C. DCDetails coming soon!
10th Anniversary RareVoice Awards
Washington, D.C. DCDetails coming soon!
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
