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
Third Annual Cross Country Challenge Kickoff
More details coming soon. Learn more
2022 OIF National Conference
The 2022 OIF National Conference will be held virtually during the weekend of July 9, 2022. More details to come! Learn more
The MAGIC Foundation’s 28th Annual Convention
Lombard, IL Lombard, ILJoin the MAGIC Foundation for an educational experience for parents of children living with an endocrine disorder. World renowned speakers from across the globe will present on physical health, mental health, insurance, genetics, education issues, and so much more! Learn more
International Metabolic Conference
Join MitoAction and the International Network for Fatty Acid Oxidation Research and Management (INFORM) for the 3rd Annual International Metabolic Conference for Fatty Acid Oxidation Disorders (FAODs) held in Pittsburgh, PA on July 22, 23, & 24, 2022. In partnership with Dr. Jerry Vockley and INFORM, MitoAction will assemble leading experts to present to families, […]
