Events Calendar

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.

This conference focuses on bringing education, resources, and connection to the Duchenne community in a family-friendly environment. Learn more and register

More details coming soon. Learn more

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 […]

The 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

More details coming soon. Learn more

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

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

A comprehensive annual, international conference focused entirely on Duchenne. Learn more

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

More details coming soon. Learn more

More details coming soon. Learn more