When I tell you that someday I hope I have the time and resources to write a book about the rare disease community and some of the many wonderful and inspiring stories out there, I'm not kidding. Here's one for which we are all grateful. I took this announcement from the Genetic Alliance newsletter.
2007 Art of Advocacy Award Winner
The Art of Advocacy Award pays tribute to a visionary grassroots leader who is harnessing his or her knowledge and experience to improve the quality of research, healthcare, information and support services for a specific condition or for a coalition of grassroots organizations.
Attend the Awards Banquet. Register here.
Abbey Meyers, National Organization for Rare DisordersTwenty-five years ago,” describes an industry representative, “this mother from Connecticut took the passion that only a loving and concerned parent can have and turned it into a vision that energized other parents of children with unmet medical needs stemming from rare diseases, that motivated physicians and other healthcare providers seeing these unusual and oft-undiagnosed disorders, and that enlightened elected public officials.” In 1983, Abbey Meyers founded the National Organization for Rare Disorders (NORD), a federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases, which is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Leading the way through NORD, Ms. Meyers is considered to be the primary consumer advocate responsible for the passage of the landmark Orphan Drug Act of 1983.The president of a rare disease advocacy organization states, “All of the tens of thousands of Americans with rare diseases who have benefited from the medicines developed for them under the Orphan Drug Act can be grateful that Abbey has the mind, heart, and voice to have been the ultimate advocate for them.”Genetic Alliance is proud to honor Ms. Meyers with the Art of Advocacy Award for her vision, dedication, and experience in moving the rare disease community forward. Her 25 years of tireless work has touched the lives of countless patients and families worldwide. Thank you, Ms. Meyers for everything you have done and will continue to do.
2007 Art of Advocacy Award Winner
The Art of Advocacy Award pays tribute to a visionary grassroots leader who is harnessing his or her knowledge and experience to improve the quality of research, healthcare, information and support services for a specific condition or for a coalition of grassroots organizations.
Attend the Awards Banquet. Register here.
Abbey Meyers, National Organization for Rare DisordersTwenty-five years ago,” describes an industry representative, “this mother from Connecticut took the passion that only a loving and concerned parent can have and turned it into a vision that energized other parents of children with unmet medical needs stemming from rare diseases, that motivated physicians and other healthcare providers seeing these unusual and oft-undiagnosed disorders, and that enlightened elected public officials.” In 1983, Abbey Meyers founded the National Organization for Rare Disorders (NORD), a federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases, which is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Leading the way through NORD, Ms. Meyers is considered to be the primary consumer advocate responsible for the passage of the landmark Orphan Drug Act of 1983.The president of a rare disease advocacy organization states, “All of the tens of thousands of Americans with rare diseases who have benefited from the medicines developed for them under the Orphan Drug Act can be grateful that Abbey has the mind, heart, and voice to have been the ultimate advocate for them.”Genetic Alliance is proud to honor Ms. Meyers with the Art of Advocacy Award for her vision, dedication, and experience in moving the rare disease community forward. Her 25 years of tireless work has touched the lives of countless patients and families worldwide. Thank you, Ms. Meyers for everything you have done and will continue to do.
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