One of my favorite moments at NORD’s recent 30th Anniversary celebration was seeing Abbey Meyers and Congressman Henry Waxman reconnect. The two played leading roles in the drama that resulted in the Orphan Drug Act of 1983. Both went on to provide key leadership on related issues — Abbey as the president of NORD for its first 25 years and Rep. Waxman in Congress.
They greeted each other with that special warmth that exists between two individuals who have fought long and hard on behalf of the same causes. It was just one of many magical moments that took place that evening in a glittering orange, blue and gold Mellon Auditorium.
The gala was a celebration of the 30th Anniversary of both the Orphan Drug Act and the founding of NORD by patient advocates who had worked together to get the law enacted. Nearly 500 people were there, representing a good cross-section of the rare disease community.
It was an emotional evening for many, with heroes who have driven progress to date sharing the spotlight with an incoming new generation of advocates.
Since that evening, many people have told us that the celebration has inspired them to work even harder on behalf of patients and their families. Moments that seem to have had a particular impact include:
NORD will post videos of other special moments from the celebration over the next few months. Watch our website for news about this.
It was a magical evening reflecting an extraordinary community effort. While much remains to be done, we are grateful to have had this opportunity to remind ourselves of how far we all have come and to show our appreciation to those who have led the way.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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