Calendar of Events
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Los Angeles Regional Meet-up
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Global Genes 2022 RARE Drug Development Symposium
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 […]
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Million Dollar Bike Ride
Million Dollar Bike Ride
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
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Spontaneous Parent Group Meeting
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Worldwide CDKL5 Awareness Day
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
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DIA 2022 Global Annual Meeting
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
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DIA 2022 Global Annual Meeting
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PPMD Annual Conference
PPMD Annual Conference
A comprehensive annual, international conference focused entirely on Duchenne. Learn more
5 events,
XLH Awareness Day
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
Third Annual Cross Country Challenge Kickoff
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