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 151st 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. 

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, Gentic Counselor
  • 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

Reports

Meetings

The Rare Disease Advisory Council will meet virtually on Tuesday, June 25, 2024.