The NORD Gala: a Night of Inspiration and Connection

Dan Leonard | July 10, 2012

On May 15th, 2012 twelve Genzyme employees joined two patient group leaders in attending the National Organization for Rare Disorders (https://www.rarediseases.org/) annual gala, a wonderful event that brings the rare disease community together for a night to celebrate progress in rare disease advocacy, awareness, research and treatment. Gala attendees included U.S. senators, Food and Drug Administration officials, private sector representatives, patient group leaders and patients themselves.

Jack Johnson, Executive Director of the Fabry Support and Information Group (http://www.fabry.org/), and Dave Pickhardt, on the Board of Directors of the FH Foundation (http://www.thefhfoundation.com/), joined the Genzyme table. We were delighted they could join us for the event to help us support NORD and the incredible work they do on behalf of the entire rare disease community.  

The event was held at Union Station in Washington D.C., a massive train station with an event hall large enough to handle the 500 + attendees who were there to celebrate and honor rare disease advocates and innovators. Many people there had been touched by a particular rare disease at some point in their lives making it a moving and inspiring event that reminded us, once again, of the power of community and connection. We are grateful to have had the chance to support NORD’s efforts for one night, and to celebrate all the great work that’s being done by patient groups, government, research institutions and industry on behalf of the rare disease community everywhere.

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