Governor appoints Fralin Biomedical Research Institute executive director to Virginia's Rare Disease Council

Michael Friedlander, Virginia Tech’s vice president for health sciences and technology and executive director of the Fralin Biomedical Research Institute at VTC, has been appointed by Virginia Gov. Glenn Youngkin to serve on the commonwealth’s Rare Disease Council.

“I look forward to the great work these dedicated individuals will do for the commonwealth,” Youngkin said in a news release.

The General Assembly formed the Rare Disease Council in March 2021 to better understand the scope of rare diseases in the commonwealth and their impact on Virginians. Its experts report back to the governor and legislators. The council was created with the purpose of:

• Advising the governor and the General Assembly on the needs of individuals with rare diseases.
• Identifying challenges that such individuals face, including delays in obtaining a diagnosis or the receipt of a misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to therapies and medication used to treat rare diseases.
  
• Funding research related to rare diseases and the development of new treatments for rare diseases.
  
• Funding to support people with rare diseases in the commonwealth.

The council members represent a wide range of rare-disease expertise and include researchers, physicians, geneticists, pharmacists and nurses; hospital, health plan, biopharmaceutical industry, and advocacy group representatives; and patients and caregivers affected by rare diseases.

Friedlander has served in a variety of capacities addressing rare diseases, including as the chair of the National Institutes of Health (NIH)-supported network of Centers for Intellectual Disabilities and as the chair of the Parents of Infants and Children with Kernicterus advisory board.

While scientists at the Fralin Biomedical Research Institute focus on the leading causes of death and suffering in the United States, including brain disorders, heart disease, and cancer, in many cases, these are rare diseases, defined by the Food and Drug Administration’s Orphan Drug Act as conditions that affect fewer than 200,000 people in the United States.

There are more than 7,000 rare diseases that affect over 30 million people in the United States, with new diseases being discovered daily as the result of powerful new research tools from molecular biology and genetics.

According to the NIH, rare diseases are difficult to diagnose, and even with a positive diagnosis, fewer than 10 percent of illnesses have an Food and Drug Administration-approved treatment. 

The council has the authority to conduct research and consult with experts to develop policy recommendations related to:

• Improving access to health care and other services for individuals with rare diseases, including access to health insurance, specialists, health care services, and other necessary services for individuals with rare diseases.
• The impact of health insurance coverage, cost sharing, tiers, or other utilization management procedures on access to health care and other necessary services.
• The impact of providing coverage under the state program for medical assistance services for approved health care services and medications for rare diseases.

In addition to his position as vice president for health sciences and technology and executive director of the research institute, Friedlander is the senior dean for research at the Virginia Tech Carilion School of Medicine.

Friedlander has served as the principal investigator on multiple research grants on brain processes that mediate vision, developmental plasticity in the brain, and traumatic brain injury. His research has been published in leading journals such as Academic Medicine, Cell, J. Neuroscience, Nature, Neuron, PNAS and Science. 

Friedlander completed a bachelor's degree at Florida State University, a doctorate in physiology and biophysics at the University of Illinois, and postdoctoral training at the University of Virginia prior to serving in leadership positions in Academic Medicine at the University of Alabama at Birmingham School of Medicine and at Baylor College of Medicine in Houston.

He is an elected fellow of the American Association for the Advancement of Science and has won national recognition for his contributions to biomedical and health sciences research, including the William Menninger Memorial Award from the American College of Physicians for achievements in the science of mental health and the Society for Experimental Biology and Medicine Distinguished Scientist Award.