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Who is the Rare Disease Community?
The National Institute of Health defines a rare disease as a condition affecting fewer than 200,000 individuals in the United States (per the Rare Diseases Act of 2002). With advances in data science and genetics, we now know there are more than 10,000 rare disease affecting millions of people nationwide.
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Most rare diseases are serious, often life-threatening and primarily affect children.
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Fewer than 5% rare disease have approved treatments
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30 million people in the U.S. are impacted, and 95% of rare diseases lack FDA-approved therapy.
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The diversity of over 10,000 types creates unique challenges for policy makers.
10,000+ Rare Disease Identified
Majority Impact Children
Less than 5% have treatments
95% lack FDA-approved therapies
The Georgia Rare Disease Advisory Council: Who We Are, How We Got Here
Grassroots advocacy began in Georgia in 2014 with annual Rare Disease Day events at the state Capital, coordinate by a registered nurse living with a rare disease. Georgia became one of the first states to advocate for a Rare Disease Advisory Council.
In 2021 and 2022, a passionate group of advocates called for formal legislation to create the RDAC, recognizing inequities in the health system for rare disease patients. The bill, endorsed by patient groups, hospitals, and medical associations, became law in May 2022, signed by Governor Brian Kemp.
Grassroots Advocacy Since 2014
Legislation Passes in 2022
Coalition of Advocates, Healthcare, Industry
Mission & Focus
Our mission is tyo provide guidance and recommendations on rare disease incidents and the needs of the rare disease community to state leaders and agencies-ultimately improving care and quality of life for Georgians impacted by a rare disease.
Mission-Driven
Patient-focused
Innovative
Pillars of Focus
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Awareness and Education: Deepen our understanding of the collective needs of the rare disease community
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Care and Support: Reduce the time to diagnosis & Improve coordination of care/transition of care
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Research and Data: Accelerate rare disease research
2024 & Beyond
We are establishing our foundation, working with the Legislature to pass bills, improve policies, increase representation, and build collaborations with community partners.
Policy & Resources Hub
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Be a comprehensive policy and information resource
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Legislature
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Governor’s Office
How: Letters of Support, Engagement with Agencies
Empower Medical Community
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Empower the medical community
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Diagnostic support tools
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Increased awareness of healthcare disparities
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Organizational maturation
How: Sharing Resources, Offering Mentorships, Co-Hosting Events
Empower Rare Diseases
Community
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Empower the rare disease community
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Connection to the medical and research community
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Increased support for advocacy, Connection to policy makers
How: Listening Sessions, Town Halls, Co-Hosting Events, Advocacy Days, Sharing Resources, Encouraging Rare Nonprofits to Form a Coalition
Meet the council Members
The members of the volunteer council represent all of the sectors in the rare disease global community. This advisory body encompasses a variety of stakeholders including patients, caregivers, medical team members, researchers, and patient advocacy organizations and advises the Georgia General Assembly, state agencies, and departments on the needs of individuals with rare diseases living in Georgia.
BETH NGUYEN
RN, RARE STRIDES; RARE WISH
Designation:
Chairperson
MARIA THACKER GOETHE
GEORGIA LIFE SCIENCES
Designation:
Secretary | Biopharma Industry Representative
JOSHUA ALBRIGHT
JAIME ALBRIGHT
TENDERFOOT TV
FAIZAL ASUMDA
WELLSTAR MCG HEALTH
NOEL BABER
KAISER PERMANENTE
MARY BARRETT YANCEY
DIVISION OF FAMILY & CHILDREN SERVICES
ELIZABETH GOSA
DEPARTMENT OF PUBLIC HEALTH
JOHN HENSON
WELLSTAR MCG HEALTH
KELVIN HOLLOWAY
DEPARTMENT OF COMMUNITY HEALTH
HONG LI
EMORY UNIVERSITY
Kojo Mensa-Wilmot
KENNESAW STATE UNIVERSITY
NATHAN PECK
CURE VCP DISEASE, INC
ALEXIS RODRIGUEZ
MG GEORGIA SUPPORT GROUP
FAWN SMITH
EFFINGHAM HEALTH SYSTEM/SOUTHERN SURGICAL PROVIDERS
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