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Press Release

Global Genes® Partners with University of Pennsylvania Orphan Disease Center for 2018 RARE Patient Advocacy Symposium

Global Genes
Posted on: 10 Apr 18
Global Genes® Partners with University of Pennsylvania Orphan Disease Center for 2018 RARE Patient Advocacy Symposium Philadelphia, Pennsylvania on May 19, 2018 Registration is NOW Open! Learn Strategies, Tools and Best Practices for Effective Patient Engagement in Rare Disease Drug Development

PR Newswire

ALISO VIEJO, Calif., April 10, 2018

ALISO VIEJO, Calif., April 10, 2018 /PRNewswire-USNewswire/ -- 

Global Genes ® , one of the world's leading rare disease patient advocacy organizations, and the University of Pennsylvania Orphan Disease Center (ODC), in conjunction with UPenn's Million Dollar Bike Ride (MDBR), are proud to announce that the 3rd Annual RARE Patient Advocacy Symposium will return on May 19, 2018, from 7:00 a.m. – 4:30 p.m. at the Sheraton University City Hotel in Philadelphia, Pennsylvania. The 2018 Symposium unites patients, advocates, industry stakeholders, foundations, medical researchers and healthcare professionals to learn, connect and be inspired by the success and development of the rare disease drug development process.

Global Genes invites all rare patients, advocates and stakeholders to participate in a full day of interactive sessions focused on the patient's role in the drug development process. Attendees will have the opportunity to participate in one of two session tracks offered for both beginners and advanced participants. Attendees do not need to be affiliated with the MDBR; all rare patients, advocates and stakeholders are welcome to attend.

The 2018 Symposium agenda is available online at:

Global Genes would like to thank 2018 Symposium Silver Sponsors: Horizon Pharma and Strongbridge Biopharma. Other 2018 Symposium sponsors include: Amicus, Catalyst, Regeneron, REGENXBIO, Ultragenyx, and Vertex.

Saturday, May 19, 2018 
7:00 am to 4:30 pm

Sheraton University City Hotel 
3549 Chestnut Street 
Philadelphia, Pennsylvania 19104 

Registration is $50 and includes breakfast and lunch.  Seating is limited, and early registration is suggested. To view the agenda and to register, please visit

Media, photographers and camera crews are welcome with prior approval. Please contact: Tori Elder, The ACE Agency (702)

About Global Genes® 
Global Genes is a leading rare disease patient advocacy organization whose mission is to connect, empower, and inspire the rare disease community. With international scope, Global Genes develops educational resources, programs, and events that unite patients, advocates, and industry experts. It is committed to fostering these meaningful connections to catalyze therapeutics and cures for the estimated 7,000 rare diseases that impact approximately 1 in 10 Americans, and 350 million people worldwide. For more information, please visit and follow @GlobalGenes on social media to join the RARE conversation!

About University of Pennsylvania Orphan Disease Center 
The Orphan Disease Center develops transformative therapies using platform technologies that can be deployed across multiple rare diseases. ODC emphasizes disorders with substantial unmet need independent of their incidence and strives to assure access to patients of all populations. The ODC, which is the first of its kind, works closely with patient groups and foundations, pharma and biotech, and the academic community. The ODC brings a unique set of programs to the table, enabling added value at any stage - from building the initial knowledge base to enabling therapeutic development. Through grants, Programs of Excellence, International Patient Registries, Jump Start programs, and a number of new initiatives, the ODC seeks to drive therapeutic development for rare diseases. ODC helps to identify and fund the most promising therapeutics while also tackling obstacles present in rare disease drug development.

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SOURCE Global Genes

PR Newswire

Last updated on: 10/04/2018

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