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There are millions of people worldwide with rare diseases who are in need of accurate diagnoses and access to appropriate treatments. Many people share their stories and opinions with me. This blog is meant to give them voice so that together we can continue the global crusade for orphan drugs to treat rare diseases.
Radio programs examining the successes and controversies surrounding orphan drugs
The stories below are January 2017 articles and NPR radio programs about orphan drug issues that were written and published by Kaiser Health News (related to the Kaiser Family Foundation) and the National Public Radio (NPR) broadcast system. They are in-depth articles examining the successes and controversies surrounding orphan drugs and how they are affecting patients lives.
UN NGO Committee for Rare Diseases Inauguration (11 November 2016, United Nations, New York City)
Abbey S. Meyers's presentation at The Global Gathering for Rare Diseases: Inaugurating the NGO Committee for Rare Diseases.
A note from retired Congressman Henry Waxman, Chairman of the House Energy & Commerce Committee
A note from retired Congressman Henry Waxman, Chairman of the House Energy & Commerce Committee, who was the House author and sponsor of the Orphan Drug Act between 1980-1983.