It Is Your Last Chance to Register!

September 6, 2016

Don’t miss your LAST CHANCE to register for our 5th Annual RARE Patient Advocacy Summit! Using feedback from patient advocates, board members, and partners, this year’s agenda will help address many of the challenges faced while living with rare disease. We hope to see you September 22-23 in sunny Huntington Beach, California.


Following the Summit don’t forget to R.S.V.P. for an unforgettable evening at the Tribute to Champions of Hope. At this RARE affair, we honor remarkable individuals who are inspiring and innovating in the RARE community. The night will include meaningful presentations, entertainment, and special guests.

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.

We hope to see you there!

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