Global Genes and R.A.R.E. Project Announce Tribute to Champions of Hope™ Gala to Honor Rare and Genetic Disease Pioneers, Innovators and Advocates

June 27, 2012

Henri Termeer, Biotech Legend and former President and CEO of Genzyme, To Receive Lifetime Achievement Award; Nominations Now Being Accepted For Medical Care and Research & Science Award Categories

DANA POINT, CAJune 27, 2012 – Global Genes ( and the R.A.R.E. Project are proud to announce the first annual ‘RARE Tribute to Champions of Hope’ Gala and Rare and Genetic Disease Patient Advocacy Summit to be held September 27-28, 2012, at the Balboa Bay Club & Resort in Newport Beach, CA. Tickets to the event are now available at:

Global Genes and the R.A.R.E. Project represent the roughly 30 million Americans and approximately 350 million people worldwide who are affected by rare and genetic diseases and disorders. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans per disease.  According to the National Institutes of Health, there are nearly 7,000 such rare diseases and an estimated 95% do not have a single approved drug treatment.

“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 RARE Champions of Hope™ – from pioneers in the biotechnology industry to individual patient advocates fighting chronic and life threatening rare diseases.”

Lifetime Achievement Award – Henri Termeer

At the 2012 RARE Tribute Gala, a special Lifetime Achievement Award will be presented to Henri Termeer, former President and CEO of Genzyme Corporation. Termeer led Genzyme for nearly 30 years and helped to establish Massachusetts as a major center of industrial biotech research and development.

“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,” added Boice.

RARE Champions of Hope™ Award Nominations

The Global Genes | R.A.R.E. Project is now accepting nominations from the rare disease community in the following award categories:

  • RARE Champion of Hope™ Award, Medical Care & Treatment – Recognizing an individual that goes above and beyond in clinical care and treatment for a rare disease patient, family or the community at large.  Someone who engages with a patient/family with a rare disease to optimize care and treatment. This person could be a doctor, nurse or special care provider.
  • RARE Champion of Hope™ Award, Research & Science – Recognizing an individual who is moving the bar in rare disease research and science. Whether from academia, industry, the clinic, or an advocacy group, this person works to advance research for a specific rare disease or is a key agent in the provision of tools and approaches to developing and/or delivering more effective treatments for the rare community.

Rare and Genetic Disease Patient Advocacy Summit

In conjunction the first annual ‘RARE Tribute to Champions of Hope’ Gala, a Rare and Genetic Disease Patient Advocacy Summit will be held September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort. Topics of discussion at the Summit will include:

  • Policy & Regulatory Reform
  • Innovative Technologies & Science
  • Non-profit Business Models
  • Building Healthy Rare Disease Communities
  • Public Communication & Media Engagement

Early supporters of the ‘RARE Tribute to Champions of Hope’ Gala and Rare and Genetic Disease Patient Advocacy Day include: Amicus, Amylin, BioMarin, Burrill & Company, Centric Health Resources, EveryLife Foundation, Genzyme, Hollencrest Capital, Lybba, Pfizer, Shire, Sigma Tau, and Synageva.

To purchase tickets to the ‘RARE Tribute to Champions of Hope’ Gala or nominate someone for a Rare Champion of Hope™ Award, please visit:

For Gala sponsorship information, please contact Jason Omenn at [email protected] or visit

About Global Genes | R.A.R.E Project

Global Genes is the leading rare and genetic disease patient advocacy organization in the world. The non-profit organization is part of R.A.R.E. Project and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. The organization’s mission emphasizes increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases.

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