ACD Virtual Conference 2021
Save the date! More information to come. Learn more
Walk for Strength 2021
Save the date! More information to come. Learn more
Association for Glycogen Storage Disease Patient/Family/Medical Conference
Cleveland, OHThe 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 […]
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
