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
International MPS Awareness Day
Every year on May 15, the mucopolysaccharidosis (MPS) and mucolipidosis (ML) community comes together to recognize those diagnosed, think about the loved ones who have been lost, thank doctors and scientists dedicated to finding cures, and acknowledge parents, siblings, and caregivers who work tirelessly to support those with MPS and ML.
CureDuchenne Futures Conference
Orlando, FLThis conference focuses on bringing education, resources, and connection to the Duchenne community in a family-friendly environment. Learn more and register
Los Angeles Regional Meet-up
More details coming soon. Learn more
Global Genes 2022 RARE Drug Development Symposium
The RARE Drug Development Symposium, in partnership with the Orphan Disease Center of the University of Pennsylvania, is designed to connect, educate, and inspire rare disease participants, whether they’re beginning or advanced. This program convenes key stakeholders across patient advocacy, research, and drug development to engage on emerging challenges, and new frameworks to advance rare […]
Million Dollar Bike Ride
Philadelphia, PAThe Penn Medicine Orphan Disease Center (ODC) will host the 9th Annual Million Dollar Bike Ride on Saturday, June 11, 2022, to raise money for rare disease research. Learn more and register
Spontaneous Parent Group Meeting
More details coming soon. Learn more
Worldwide CDKL5 Awareness Day
Each June, the CDKL5 community works to educate and raise awareness about the disorder. June has special meaning to the CDKL5 community, and June 17 is Worldwide CDKL5 Awareness Day. Learn more
DIA 2022 Global Annual Meeting
The DIA 2022 Global Annual Meeting brings together thousands of innovators from around the globe to discuss updates in the ever-changing field of life sciences. Learn more
PPMD Annual Conference
Scottsdale, AZA comprehensive annual, international conference focused entirely on Duchenne. Learn more
XLH Awareness Day
June 23 is X-linked hypophosphatemia (XLH) Awareness Day. Each year, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong. Learn more
Virtual Capitol Hill Visits with Senators and Representatives
More details coming soon. Learn more
