September 9, 2014

3rd Annual RARE Patient Advocacy Summit


The Global Genes Project’s 3rd Annual RARE Patient Advocacy Summit will be held Sept. 11-12 at the Hyatt Regency Resort & Spa in Huntington Beach, CA.
It’s a chance to learn all about being a patient advocate, proactive and productive in efforts to better the lives of those with rare disease; to be an effective advocate in lobbying elected officials and reach out to major pharmaceutical companies, forming a relationship to bring drugs to patients.
More than 200 participants are expected to attend. For those who can’t be there in person, the conference is also available to view via Livestream. To register for the FREE Livestream Event, please go to: http://globalgenes.org/2014-summit-livestream-registration.
This year’s sessions include:
  • Caregiving: Strategies for Staying Afloat, Presented by Caregiver Action Network
  • The E-Patient Revolution, Presented by Health 2.0 and Smart Patients
  • Patient-Centered Benefit-Risk Assessment, Presented by FasterCures
  • 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

 Two new sessions 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 promising innovations in science.

Those who watch on Livestream can participate via twitter and Facebook using the hashtag #2014GGSummit.
Read more about the summit hereTo register, visit globalgenes.org/events.

1 comment :

  1. Sad to hear about your child's medical problem. What is doctor saying about this disorder? can this be treated medically? How expensive is it? Love your family.

    ReplyDelete