Alabama Rare community advocates for the passing of the Alabama Rare Disease Advisory Council

The council was passed unanimously and Governor Bentley signed it into law in April 2017. Alabama is only one of five states to have a council. The first meeting was held in August 2018. Visit this link to read the details of the bill creating the Rare Disease Advisory Council and the descriptions of its respective members: AL Rare Disease Advisory Council Bill

Current Members who will serve from 2018-2021:

  • Bruce Korf, M.D., Ph.D., Chief Genomics Officer, UAB - Chair of Council

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

  • Kristin Anthony, President & PTEN Patient Advocate, PTEN Hamartoma Tumor Syndrome Foundation.

  • Beth Barnby, CRNP, DNP, Clinical Associate Professor & Tyrosinemia Parent Advocate, UAH School of Nursing

  • Martina Bebin, M.D., M.P.A, Professor & Director of UAB Tuberous Sclerosis Clinic, UAB Department of Neurology

  • David Bick, M.D., Clinical Geneticist, Chief Medical Officer, & Faculty Investigator, HudsonAlpha Institute for Biotechnology

  • Karan Fagan, M.D., Director of Division of Pulmonary & Critical Care and the PHA Center, University of South Alabama

  • Tony Fargason, M.D., Chief Medical Officer, Children’s of Alabama

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

  • Scott Griffin, President & DMD Parent Advocate, Hope for Gabe Foundation

  • Matt Might, Ph.D., Director of the Hugh Kaul Precision Medicine Institute & NGLY1 Parent Advocate, UAB

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

  • Tammi Skelton, MSN, CRNP, Nurse Practitioner, UAB Genetics

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

  • Katelyn Staley, CPNP, Pediatric Nurse Practitioner, Children’s of Alabama

  • Dan Roberts, Alabama State Senator

  • Linda Coleman-Madison, Alabama State Senator

  • Scott Harris, M.D., Alabama State Health Officer

Current Open Spots:

  • Patient/Caregiver from Congressional Districts 1, 2, 3, 5, or 7, who resides in the district, and who represents an IRS-established non-profit rare disease foundation. If interested, please email alabamarare@gmail.com

Governor Ivey names February 28 as Rare Disease Day and February as Rare Disease Awareness month in Alabama from here on out

Governor Kay Ivey signed a resolution for February 28 to be rare disease day in Alabama Wednesday, February 28, 2018 in Montgomery, AL. HJR 149, which the Governor signed into law last week, says the Legislature recognizes the last day of February this year and in following years as Rare Disease Day in Alabama. According to the resolution, there are about 7,000 diseases and conditions considered rare, defined as each affecting fewer than 200,000 Americans. These diseases include multiple sclerosis; cerebral palsy; and ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's Disease. The resolution says patients and their family members, researchers, caregivers, and others may "join together to focus attention on rare diseases as a public health issue and participate in the observance of Rare Disease Day" on the last day of each February. (Governor's Office, Hal Yeager)