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Great Seal of the State of Delaware featuring a coat of arms with a sailing ship, farmer, and laborer.
Kyle Evans Gay Office of the Lieutenant Governor

Rare Disease Advisory Council

The Rare Disease Advisory Council is an advisory body comprised of community advocates, healthcare professionals, scientists, and state leaders that works to educate medical professionals, government agencies, legislators, and the public about rare diseases as an important public health issue and encourage and secure funding for research for the development of new treatments for rare diseases.

Established by Senate Bill 55 from the 152st General Assembly, the council is housed within the Lieutenant Governor’s Office.

The council will:

  • Consult with experts on rare diseases to develop policy recommendations to improve patient access to and quality of rare disease specialists, affordable and comprehensive health care coverage.
  • Research and make recommendations to state agencies and insurers that provide services to persons with a rare disease.
  • Identify priorities related to treatments and services provided to persons with rare diseases in Delaware and develop policy recommendations that include safeguards against discrimination for these populations on such issues.

Advisory Council Meetings

The Rare Disease Advisory Council meets online, and those meetings are open to the public. If you’d like to attend, please see our Public Meeting Calendar for a schedule of upcoming meetings.

Public Meeting Calendar

Rare Disease Advisory Council Members

Andrew Babb, PharmD

Pharmacist

Rep. Krista Griffith

State Representative

Sen. Nicole Poore

State Senator

Cristine Vogel

Insurance Commissioner’s Office

Dr. Olubusola Ogunlade

Department of Health and Social Services

Zohra Ali-Khan Catts

Academic Research Institution

Stephen Flachek, MD

Physician

Stepanie H. Guarino, MD

Scientific Community

Kelvin H Lee, Ph.D.

Academic Research Institution

Janice Meyer

Member of the Public

Irfan Patel

Member of the Public

David Tam, MD

Hospital Administrator

Karen Gripp, MD

Geneticist

Jonathan Hawayek

Biopharma Administrator