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FAIR at NORD's
22nd Annual Convention in Virginia
Dr. Darling with new FAIR member,
Jack Dudat, PhD. A NORD
Founder/President, Abbey S. Meyers,*1
directed a
financial planner with
MetDESK, MetLife's Division of
Estate convention that provided help to patients
and their families
Planning for Special Kids, Jack provides financial assistance
regarding health insurance matters. In addition, the event
to caregivers struggling with expenses created by illnesses.
provided training for the leaders of health organizations.
NORD Convention Attendees benefited from
....... with Donna Bolton, Development
numerous informative lectures surrounding the
Associate who was extremely helpful to all
overall title of the event: "Access to Medical
exhibitors and attendees at the Convention.
Care: Navigating Medicare, Medicaid, and
Thank you, Donna!
Private Insurance"
“Diane Dorman, NORD's Vice President for Public Policy, provides
frequent briefings and updates to
NORD member organizations from her Washington, DC, office
regarding orphan-disease legislation and
policies. If you would like to contact Diane write to
ddorman@rarediseases.org or call (202) 496-
1296.”
NORD is
committed to the identification, treatment, and cure of rare disorders
through
programs of education, advocacy, research, and service.
*1
Abbey S. Meyers has served as the consumer representative on
the National Commission On Orphan
Diseases (1986-89), the NIH Human Gene Therapy Subcommittee (1989-92), the
NIH Recombinant DNA
Advisory Committee (RAC) (1993-96), the FDA Biological Response Modifiers
Advisory Committee
from 1995 to 1999), & the DHHS National Human Research Protections Advisory Committee.
She
continues to serve as an ad hoc advisor to the FDA's Biological Response Modifiers
Advisory Committee (1999-2004) and is a member of the Partnership for Human Research Protection Public
Advisory Council
(2005-Present). She is the recipient of the FDA Commissioner's Special Citation
for "Exceptional
Dedication and Achievements on Behalf of All People Afflicted with Rare Disorders" (1988),
and the
Department of Health and Human Services Award for Public Health Service for Exceptional
Achievements in Orphan Drug Development (1985). Mrs. Meyers holds an Honorary Doctorate from
Alfred
University in New York. She is considered the primary consumer advocate responsible for
passage of the
Orphan Drug Act of 1983, the Rare Diseases Orphan Products Development Act of
2002, and the Rare
Diseases Act of 2002.
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