June 02, 2012

As an innovative program of the Office of Rare Diseases Research (ORDR) at NIH, the Rare Diseases Clinical Research Network (RDCRN) demonstrates the value of collaborative research networks to accelerate clinical research in rare disorders. By harnessing the combined power of top researchers, affected individuals and advocacy groups, this very successful model for rare disease research engages more than 80 patient groups (representing 172 rare conditions) in more than 100 studies and has resulted in over 700 publications.

On May 15, 2012, the National Organization for Rare Disorders (NORD) honored the RDCRN team (CPAG, Scientists of RDCRN and the NIH) at their annual Partners in Progress gala in Washington, DC. This event recognized organizations and individuals from industry, government, elected office and the private sector that have demonstrated outstanding leadership in advancing rare disease initiatives.

Peter L. Saltonstall, NORD president and CEO said, "This is NORD's opportunity to celebrate excellence and to say thank you on behalf of the patient community to those who have advanced the cause during the previous year,". He continued,"We look forward to this event each year, and we truly appreciate the accomplishments it honors."

Accepting a Partners in Progress award on behalf of the RDCRN program were Dr. Stephen Groft, Director of ORDR, who, along with his dedicated team, is the driving force behind the phenomenal success of the RDRCN program. Alan Percy, MD, chair of the RDCRN Steering Committee and Michele Manion, chair of the RDCRN Coalition of Patient Advocacy Groups (CPAG) were also on hand to share in this prestigious honor.

It is truly gratifying to have the hard work and success of this network recognized by NORD, whose decades-long dedication to rare disease advocacy helped pave the way for these achievements.

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Fall 2012