Appointed by Governor to 3-year terms: Erika F. Augustine, M.D.; Philip H. Iffland II, Ph.D.; Ada Hamosh, M.D.; Peter M. Hill, M.D.; Matthew Mehan; Kristopher Rusinko, Pharm.D., Ph.D.; Constance Smith-Hicks, M.D.; Jeneva Stone, Ph.D.; Lauren Shillinger; Teonna Woolford; five vacancies.
Appointed by Senate President: Clarence K. Lam
Appointed by House Speaker: Jamila J. Woods
Appointed by Secretary of Health: Mary G. Mussman
Appointed by Director, Office of Minority Health & Health Disparities: Camille Blake-Fall
Appointed by Maryland Insurance Commissioner: Jamie N. Sexton, J.D.
Ex officio: Laura Herrera Scott, M.D., Secretary of Health; Jamie L. Fraser, M.D., Chair, State Advisory Council on Hereditary & Congenital Disorders.
Staff:
![[photo, Herbert R. O'Conor State Office Building, 201 West Preston St., Baltimore, Maryland]](/msa/mdmanual/16dhmh/images/1198-1-687.jpg)
c/o Office of Children & Youth with Specific Health Care Needs
Herbert R. O'Conor State Office Building, 201 West Preston St., Baltimore, Maryland, March 2004. Photo by Diane F. Evartt.
In October 2023, the Rare Disease Advisory Council was formed by the General Assembly (Chapters 360 & 361, Acts of 2023).
During its first year, the Council is to conduct a survey of the needs of rare disease patients, caregivers, and health care providers in Maryland, and convene public hearings, make inquiries, and solicit comments from the public to assist in this endeavor.
The Council consults with experts on rare diseases to develop policy recommendations for improving patient access to and the quality of rare disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other needed services. Further, to enable continuity of care for rare disease patients and ensure that safeguards against discrimination for rare disease patients are in place, the Council works to establish best practices and protocols to include in State planning related to natural disasters and public health emergencies, or other emergency declarations.
For State agencies and insurers that provide services to individuals with a rare disease, the Council conducts research and make recommendations on the impact of prior authorization, cost–sharing, tiering, or other use management procedures that affect the provision of treatment and care for patients. Moreover, to improve coverage of diagnostics, and facilitate access to necessary health care providers with expertise in the treatment of rare diseases, the Council evaluates and makes recommendations regarding coverage of prescription drugs for rare disease patients, including patients with private health insurance coverage and thoss enrolled in the Maryland Medical Assistance Program.
On its website, the Council publishes a list of existing and publicly accessible resources on research, diagnosis, treatment, and education relating to rare diseases. Moreover, the Council identifies areas of unmet needs for research that can inform future studies and reports by the Council; identifies and distributes educational resources for health care providers to foster recognition and optimize treatment of rare diseases in the State; and researches and identifies best practices to ensure continuity of care for rare disease patients transitioning from pediatric to adult care.
Twenty-one members constitute the Coouncil. Fourteen are appointed by the Governor. The Senate President and House Speaker each appoint one member. The Secretary of Health, the Director of Office of Minority Health and Health Disparities, and the Maryland Insurance Commissioner also each appoint one member. Two members serve ex officio (Code Health-General, secs. 13-4801 through 13-4804).
Authorization for the Task Force ends June 30, 2027.
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e-mail: mdmanual@maryland.gov
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