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 […]
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
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
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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
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Third Annual Cross Country Challenge Kickoff
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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