July 10, 2014

3rd Annual RARE Patient Advocacy Summit

September 11-12, 2014
Hyatt Regency Resort & Spa, Huntington Beach, California

Register today!

What if you could learn EVERYTHING you needed to know about being a patient advocate in just two days? What if you could learn how to be prepared, proactive, and productive in your efforts to better the lives of those with rare disease? What if you could be an advocate with the know-how to lobby congress and effect change? What if you felt you really had the ability to reach out to the largest pharmaceutical companies in the world—and form a powerful relationship to bring drugs to patients now?

This is what over 200 participants will be learning in-person, and over 5,000 via Livestream during the Global Gene’s 2014 RARE Patient Advocacy SummitSeptember 11-12, at the Hyatt Regency Resort & Spa in beautiful Huntington Beach, CA.
This year, participants can expect more toolsexperts, and exploration than ever before. Everything has changed. The feedback we received from the last few years has been positive, but what we now understand is how much more depth our community wants and needs on topics related to their rare disease journey—and we’re determined and ready to give them that!

This year’s sessions, lead by an extraordinary team of experts, include modules on:
  • Caregiving: Strategies for Staying Afloat, Presented byCaregiver Action Network
  • The E-Patient Revolution, Presented by Health 2.0 andSmart Patients
  • Patient-Centered Benefit-Risk Assessment, Presented byFasterCures
  • Making your organization an “Unstoppable Charity”
  • Lobbying at the State and Federal Level
  • Transition & Transformation with Rare Disease from Adolescence to Adulthood.
  • Must Have Collaborations for Successful Drug Development

Also NEW this year:
  • Deep Dives - branched-off discussions that will allow small groups to interact with subject matter experts to help them go more deeply into the content of each session have been added to the agenda.
  • Science Briefs -15 minute science pitches with 5 minutes of Q&A, discussing some of the most promisingInnovations in Science.

Can’t attend in person? Our new Livestream component will allow up to 5,000 advocates from around the globe to attend virtually via webcast at no cost! The event will be broadcast live with opportunities for patients to participate from afar using social media such as twitter and Facebook, using the hashtag #2014GGSummit.

Read more about the RARE Patient Advocacy Summit here.

To register for this event (in-person or via Livestream), please visit: http://globalgenes.org/events

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