RARE Patient Advocacy Symposium

May 19, 2018

7:00 am - 4:30 pm

Philadelphia, PA

Registration is now open for the third annual RARE Patient Advocacy Symposium, being hosted Saturday, May 19! Global Genes, in partnership with the Penn Medicine Orphan Disease Center at the University of Pennsylvania's Perelman School of Medicine, will present the RARE Patient Advocacy Symposium, an educational event connecting rare disease patients and advocates, industry stakeholders, foundations, medical researchers, and healthcare professionals. The compelling agenda for this one-day event will emphasize the drug development process.

Mechanistic and Therapeutic Advances in Rare Skeletal Diseases

Mechanistic and Therapeutic Advances in Rare Skeletal Diseases


September 26, 2018-


April 27, 2018



8:00 am -

7:00 pm

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ZC4H2 Deficiency Think Tank (Inquire if interested)

ZC4H2 Deficiency Think Tank (Inquire if interested)


September 20, 2018


9:00 am -

5:30 pm

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Crigler-Najjar Syndrome Symposium in London

Crigler-Najjar Syndrome Symposium in London


June 08, 2018-


June 09, 2018



9:00 am -

5:30 pm

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RARE Patient Advocacy Symposium

RARE Patient Advocacy Symposium


May 19, 2018


7:00 am -

4:30 pm

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Million Dollar Bike Ride Information Session

Million Dollar Bike Ride Information Session


April 12, 2018


6:15 pm -

7:30 pm

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Rare Disease Day

Rare Disease Day


February 28, 2018


5:00 pm -

6:30 pm

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CDKL5 Forum in Boston

CDKL5 Forum in Boston


November 29, 2017-


November 30, 2017



9:00 am -

5:30 pm

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Deciphering Beckwith-Wiedemann Syndrome

Deciphering Beckwith-Wiedemann Syndrome


July 21, 2017-


July 23, 2017



9:00 am -

5:30 pm