Events Calendar

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!

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 […]

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.

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 […]

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 […]