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: https://legiscan.com/AL/text/HJR115/2017
Current Members who will serve from 2018-2021:
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.
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 firstname.lastname@example.org
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)