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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.

  • Most rare diseases are serious, often life-threatening and primarily affect children.

  • Fewer than 5% rare disease have approved treatments

  • 30 million people in the U.S. are impacted, and 95% of rare diseases lack FDA-approved therapy.

  • 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 to 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

  • Awareness and Education: Deepen our understanding of the collective needs of the rare disease community 

  • Care and Support: Reduce the time to diagnosis & Improve coordination of care/transition of care 

  • 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
 

  • Be a comprehensive policy and information resource

  • Legislature

  • Governor’s Office

How: Letters of Support, Engagement with Agencies

Empower Medical Community

  • Empower the medical community

  • Diagnostic support tools

  • Increased awareness of healthcare disparities

  • Organizational maturation

How: Sharing Resources, Offering Mentorships, Co-Hosting Events

Empower Rare Diseases
Community

  • Empower the rare disease community

  • Connection to the medical and research community

  • 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
 

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MARIA THACKER GOETHE

GEORGIA LIFE SCIENCES

Designation:

Secretary | Biopharma Industry Representative

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JOSHUA ALBRIGHT

Designation:

Patient living with a rare disease

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JAIME ALBRIGHT

TENDERFOOT TV

Designation:

Caregiver of a patient living with a rare disease

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NOEL BABER

KAISER PERMANENTE

Designation:

Health Plans Representative

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MARY BARRETT YANCEY

DIVISION OF FAMILY & CHILDREN SERVICES

GA Department of Human Services Representative

Designation:

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ELIZABETH GOSA

DEPARTMENT OF PUBLIC HEALTH

Governor Kemp Appointment

Designation:

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JOHN HENSON

WELLSTAR MCG HEALTH

Designation:

Physician practicing in Georgia with experience treating rare diseases

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KELVIN HOLLOWAY

DEPARTMENT OF COMMUNITY HEALTH

Designation:

Division of Medical Assistance Plans

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HONG LI

EMORY UNIVERSITY

Designation:

Geneticist

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Kojo Mensa-Wilmot

KENNESAW STATE UNIVERSITY

Designation:

Representative from Academic Research Institution

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ALEXIS RODRIGUEZ

MG GEORGIA SUPPORT GROUP

Designation:

Citizen Appointee

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FAWN SMITH

EFFINGHAM HEALTH SYSTEM/SOUTHERN SURGICAL PROVIDERS

Designation:

Registered Nurse with experience treating rare diseases

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OPEN APPOINTMENTS

  1. PATIENT ORGANIZATION REPRESENTATIVE

  2. PEDIATRIC SPECIALIST TRAINED IN THE CARE OF CHILDREN WITH RARE DISEASE

  3. LCSW (SOCIAL WORKER) REPRESENTATIVE

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