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Dana Point nonprofit plans awards gala and advocacy summit for rare and genetic diseases

Global Genes and the R.A.R.E Project will host inaugural awards night and summit in September

by Mackenna WaterhousePublished: June 29, 2012 01:30 PM

Global Genes and the R.A.R.E Project of Dana Point announced this week plans for its first awards gala and advocacy summit, R.A.R.E. Tribute to Champions of Hope, to be held at the Balboa Bay Club and Resort in September.

The R.A.R.E. Project is a nonprofit advocacy organization for the nearly 30 million Americans who make up the rare and genetic disease community, which often has little available treatment. Global Genes is the organization’s worldwide public information and awareness program, comprised of more than 500 international organizations promoting research and pursuing cures for scores of rare diseases. The awards gala, planned for Sept. 27, will honor advocacy organizations and disease research pioneers.  

"We are honored to be able to pay tribute to the key innovators and pioneers in the rare and genetic disease community who are moving research forward and developing new innovative therapies for millions of patients affected by rare conditions," said Nicole Boice, founder and CEO, Global Genes R.A.R.E Project. "We are looking forward to an incredible evening of inspiration as the rare disease community unites to honor our R.A.R.E. Champions of Hope – from pioneers in the biotechnology industry to individual patient advocates fighting chronic and life threatening rare diseases."

According to the National Institute of Health, 95 percent of the 7,000 known rare diseases don’t have approved treatment.

The Lifetime Achievement Award will go to Henri Termeer, former president and CEO of Genzyme Corporation, for his 30 years of work establishing a major center of biotech research and development in Massachusetts.

"Henri is a true champion of hope and a hero to countless patients in the rare disease community for his work in spearheading the development of rare disease treatments at a time when other pharmaceutical companies were focusing on drugs for much larger patient populations," Boice said.

Other awards will include Champion of Hope in Medical Care and Treatment and Champion of Hope in Research and Science.

The Rare and Genetic Disease Patient Advocacy Summit on Sept. 28, also at the Balboa Bay Club and Resort, will focus on research and technology, policy and regulatory reform, nonprofit business models, building disease communities and media engagement.

Tickets for the Champions of Hope gala are available. Click here for more information about the event or to purchase tickets.

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