RARE Patient Advocacy Symposium

May 19, 2018 - 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.

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This event it open to all rare disease stakeholders and the agenda will emphasize the patients’ role in the drug development process.

Topics include:

• New and Continuing Role for Patients in Research and Drug Development

• Drug Development 101: The Basics of the Process

• New Approaches and New Approval Pathways to Drug Development

• Why and How Should Our Community Start A Patient Registry?

• Why and How Should we Expand the Data in Our Registry?

• How to Begin Research Collaborations

• Expanding Your Reach: Strategically Growing Your Research Collaborations

• Who's Who at Regulatory Agencies

• When and How to Talk to the Regulators