ALABAMA RARE DISEASE ADVISORY COUNCIL

With more than 400,000 of its residents affected by rare diseases, the state of Alabama has created the Alabama Rare Diseases Advisory Council to advise the governor and legislature on research, diagnosis, treatment and education regarding rare diseases and their impact on the state. The council is headquartered at the University of Alabama at Birmingham School of Medicine. Upon the recommendation of the Dean of the school, Selwyn Vickers, M.D., Gov. Kay Ivey has appointed Bruce Korf, M.D., Ph.D., Chief Genomics Officer at UAB, as the chair.

The duties of the council include collecting data on rare diseases, including cost and economic impact on the people of Alabama, along with coordinating disease collaborations between stakeholder organizations. The council will facilitate research opportunities between academic medical centers, biotech and pharmaceutical companies, non-profit research and medical institutions, advocacy groups, and state/federal funding agencies. The council will report annually to the legislature with the goal of addressing rare disease policies that will positively impact the residents of the state.

The following individuals will serve a three-year term (2018-2021) of service on the council:

-Matthew Alexander, Ph.D., Assistant Professor of Pediatric Neurology, UAB Department of Pediatrics and Children’s of Alabama

-Kristin Anthony, President, PTEN Hamartoma Tumor Syndrome Foundation

-Martina Bebin, M.D., Professor, UAB Department of Neurology

-David Bick, M.D., Faculty Investigator, HudsonAlpha Institute for Biotechnology, Huntsville

-Katelyn Englert, CPNP, Pediatric Nurse Practitioner, Children’s of Alabama

-Mark Gillespie, Ph.D., Professor and Chair, Department of Pharmacology, University of South Alabama

-Scott Griffin, President, Hope for Gabe Foundation

-Matt Might, Ph.D., Director of the Hugh Kaul Precision Medicine Institute, UAB

-Sam Perna, D.O., Assistant Professor, Division of Gerontology, Geriatrics and Palliative Care, Department of Medicine, UAB

-Stephen Sodeke, Ph.D., Professor of Allied Health Sciences, Tuskegee University.

The legislation was sponsored by April Weaver (R), House District 49; Tommy Hanes (R), House District 23; Joe Lovvorn (R), House District 79; Mike Ball (R), House District 10; Phil Williams (R), House District 6; Matt Fridy (R), House District 73; and Alan Harper (R), House District 61.

Visit www.alabamararediseasecouncil.org to learn more about Alabama’s Rare Disease Advisory Council.