Loading Events

« All Events

  • This event has passed.

Global Genes 5th Annual RARE Patient Advocacy Summit

September 22, 2016 @ 7:00 am - September 23, 2016 @ 5:00 pm

Event Navigation

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.

Here’s what you’ll learn:
Practical next steps for taking action in the areas of research, legislation, fundraising, and community support. Core fundamentals and skills to help you start, grow and strengthen your nonprofit organization. Strategies for building online communities and why they are essential for rare disease awareness. Understanding the power of genetic data and patient involvement for advancing research for your disease. Tools and insights into crafting successful collaborations with researchers, biotech, pharma and the FDA. Invaluable connections with advocacy leaders that will help you define and propel your rare disease priorities forward. Be prepared – the Summit will educate you and will exhaust you, but. . . it will also inspire you.


September 22, 2016 @ 7:00 am
September 23, 2016 @ 5:00 pm


Hyatt Regency Huntington Beach Resort and Spa
21500 Pacific Coast Highway
Huntington Beach, CA 92648 United States
+ Google Map