Southern California Rare Disease Advocates Meet To Share Information

June 18, 2012

On Thursday, May 31st, 2012, Global Genes our first RARE Meetup™ for South Orange County in Dana Point, California.  Patients and parent advocates met at Hennessey’s Restaurant to get acquainted and to share stories.  14 people, representing seven rare diseases and 10 rare disease foundations. were in attendance.  Adult discussion included sharing individual and family stories, exchange of resource information, and fundraising ideas.  A big topic of discussion was the challenges of getting government support for rare disease research, genetic testing, pending legislation and drafting bills.

Rare Diseases Represented
  • Ehlers-Danlos Syndrome, Dysautonomia, Long QT Syndrome, Langerhans Cell Histiocytosis, Krabbe Disease, Metachromatic Leukodystrophy, and Ankylosing Spondylitis
Foundations Represented
  • HistioFamily, Liam’s Lighthouse, Kristie’s Foundation, Matthew & Andrew Akin Foundation, Histio Heroes Research Fund, Haleycurls for Hope, Histiocytosis Association, The Peace, Love & Trevor Foundation, MLD Foundation, Hunters Hope and American Spondylitis Association

Our goal is to expand the RARE Meetups™ program.  We already have 22 potential leaders ready to begin organizing RARE Meetups™ in Reno, NV, Chicago, IL, Riverside, CA, Ventura, CA, Cleveland, OH, Sioux Falls, SD, Huntersville, NC, and many more locations.

For more information RARE Meetups™ email: [email protected]

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