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RARE Patient Advocacy Summit
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9/22/2016 to 9/23/2016
When: Thursday, September 22, 2016
Where: Hyatt Regency Huntington Beach Resort and Spa
21500 Pacific Coast Highway
Huntington Beach, California  92648
United States

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A rare diagnosis changes everything. You weren’t given a playbook on how to cope, how to take that next step, and you certainly weren’t handed a blueprint on how to build an advocacy organization and successfully bring a therapy to market. The good news is that rare disease advocates are some of the most inspiring, innovative activists on the planet, and Global Genes is works to bring the community together to share best practices, create important introductions, and help catalyze powerful collaborations.

This is why Global Genes’ would like to invite you to join The Fifth Annual RARE Patient Advocacy Summit on September 22 – 23, 2016 in Huntington Beach, California! The goal of this year’s RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades.  

  

 

To register for the event click here

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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