Rare Disease SC

Welcome to the South Carolina Rare Disease Advisory Council

A pen writing in a weekly planner 

Upcoming Meeting

Our next meeting will be held in April 2024. Details to come.

Contact us at scrdac@musc.edu for more info.

Rare Disease Symposium

February 29, 2024, from 10:00 a.m. to 2:00 p.m.

Attend in-person or virtually to learn about innovative and impactful research going on across the state, hear personal stories from those affected by rare disease and discover some of the important advocacy work that's grown out of both necessity and hope.

The symposium is free and open to the public, but registration is strongly encouraged.

In-person Location: Segra Park, 1640 Freed Street, Columbia, SC 29201

Boxed lunches will be provided to anyone attending in-person who registers on or before February 14, 2024.

Learn More: Kendall Spillman

Registration is now open

Register now to attend the Rare Disease Symposium (in-person or virtually) on February 29, 2024.

Rare Disease Needs Assessment

Person holding a rare disease awareness  day ribbon

Are you or someone you care about living with a rare disease? South Carolina’s Rare Disease Advisory Council (RDAC) welcomes your feedback on experiences navigating the disease. Your survey responses will be used to help develop and prioritize the SC RDAC’s efforts and initiatives.

We want to hear from you.

Mission

The council shall advise the Governor, the General Assembly, and other stakeholders on research, diagnosis, treatment, and education related to rare diseases.

Membership

The council is composed of fifteen members and intended to be broadly representative of stakeholders. Each position is appointed by statewide leadership including the President of the Medical University of South Carolina (MUSC), the Dean of the University of South Carolina (UofSC) School of Medicine, the Director of the Department of Health and Environmental Control (DHEC), the Director of the Department of Health and Human Services (DHHS), the Executive Director of the South Carolina Hospital Association (SCHA), the Executive Director of the South Carolina Primary Healthcare Association (SCPHA), and the Executive Director of the State Public Benefit Authority (SPBA).

Chair
Patrick Flume, M.D. (MUSC)

Department of Health and Environmental Control
Ginie Daguise, Ph.D.

Department of Health and Human Services
Kevin Wessinger, M.D.

Medical University of South Carolina
Dan Judge, M.D. (cardiology)

University of South Carolina School of Medicine
Divya Ahuja, M.D. (infectious diseases)

South Carolina Hospital Association
Kate Wink (Santee Cooper)

South Carolina Primary Healthcare Association
Vicki Young, Ph.D.

Biopharma Industry
Jonathan Hawayek (SPARK Therapeutics)

Research and Treatment of Rare Diseases
Neena Champaigne, M.D. (pediatric genetics)
Maysen Mesaros, MS (neurology)
Chip Norris, Ph.D. (connective tissue)

Patients
Anthony Hamilton
Karen Kemper, Ph.D.

Rare Disease Organization
Megan Onysko (Cystic Fibrosis Foundation)

Caregivers of Persons With Rare Diseases
Jason Smith

State Health Plan
Tripp Jennings, M.D.

Responsibilities of the Advisory Council

  • Solicit comments from stakeholders, including patients and patient caregivers in South Carolina impacted by rare diseases, to assess the needs of rare-disease patients, caregivers, and providers in the State.
  • Consult with experts on rare diseases to develop recommendations to improve patient access to and quality of rare-disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other needed services.
  • Research and identify priorities related to treatments and services provided to persons with rare diseases in South Carolina and develop recommendations that include safeguards against discrimination for these populations on such issues, including disaster and public health emergency-related planning.
  • Publish a list of existing, publicly accessible resources on research, diagnosis, treatment, and education relating to the rare diseases in South Carolina.
  • Identify and distribute educational resources to foster recognition and optimize treatment of rare diseases in South Carolina.
  • Identify best practices to reduce health disparities and achieve health equity in the research, diagnosis, and treatment of rare diseases in South Carolina.
  • Report annually (by June 30) to the Governor, the Chairman of the Senate Finance Committee, the Chairman of the Senate Medical Affairs Committee, the Chairman of the House Ways and Means Committee, and the Chairman of the House Medical, Military, Public and Municipal Affairs Committee.