Global Genes Project | R.A.R.E will hold a Patient Advocacy Summit on Friday, September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort.  Rare and genetic disease patient advocates will have an opportunity to engage, learn, and discuss a variety of topics leading them to collaborations with hopes of benefiting the entire rare community.

Simulcast Instructions:

The Summit will be shared via web casting and video recording for the benefit of those who are unable to attend. Although it will be live, viewing is also available after the event.  Simulcast registration is required to receive access to the web cast link.  Registration is available HERE.

Summit notes of importance:
  • Check-in begins between 8:30am & 8:45am.
  • The Summit begins promptly at 9am until 3pm in the Commodore Room at the Balboa Bay Club.
  • Tables will be provided for those who would like to display pamphlets, brochures, and information about your organization, events, or disease awareness.
  • Deadline for electronic brochures and/or information for distribution at the Summit is Saturday, September 22.
  • Lunch will be provided with topic-focused networking.
  • For special needs and/or wheelchair accommodations, please contact (Amy Grover) amyg@rareproject.org prior to the event.
  • Wear your jeans in support of our “Genes” campaign for rare and genetic diseases.