Governor John Bel Edwards has created the first Rare Disease Advisory Council which includes Hayward Genetics Center’s Director Hans C. Andersson, MD, FFACMG. Dr. Andersson has been appointed to serve as a physician with expertise in the research, diagnosis, and treatment of rare diseases. Dr. Andersson has been a part of the Newborn Screening Advisory Committee for over 30 years and brings a long-standing reputation for rare disease advocacy and management.
The Rare Disease Advisory Council is an advisory committee that provides a platform for the rare disease community to have a voice within their state government. According to the National Organization for Rare Disorders (NORD) website, there are over 7,000 known unique rare diseases and Louisiana is now one of the 24 states that have established legislation in support of the rare disease community. This council will offer expert and clinical advice to the Louisiana Department of Health, the Governor, and the legislature in order to address the needs of people who have been diagnosed with a rare disease.
More information can be found here:
https://gov.louisiana.gov/index.cfm/newsroom/detail/3406
For more information regarding NORD:
HAPPY BIRTHDAY
Today, August 1, we remember Henrietta Lacks whose cells were used by thousands of researchers in developing human vaccines and therapies. These cells, called “HeLa” cells (HEnrietta LAcks), were obtained without Ms. Lacks knowledge or consent and had the special quality of immortality, dividing continuously where other cells of this type died in culture. The biological quality made them unique and valuable in many different types of experiments.
But we remember Henrietta Lacks and her HeLa cells because they stand as an example of inappropriate coopting of person’s tissues without consent. We have learned from the experience of HeLa cells that every person who donates tissues or biological samples, for research or clinical diagnostics, must offer informed consent.
This important case study has been described in detail in the book “The Immortal Life of Henrietta Lacks” written by Rebecca Skloot. There are many websites and videos which describe the story of Henrietta Lacks and her immortal cells (https://en.wikipedia.org/wiki/Henrietta_Lacks).
Comments from letter of recommendation for this award:
“Grace began her metabolic career at Tulane University School of Medicine in January of 2016. She is one of the primary dietitians for the genetics division. …In addition to her clinic role, she works with the Louisiana Newborn Screening program coordinating confirmatory testing for over 100 infants per year with abnormal screening results. She also provides education to Tulane students on the treatment of IEM and NBS and precepts dietetic interns throughout the year.
Grace was lead author on a publication “False-Positive Newborn Screen Using the Beutler Spot Assay for Galactosemia in Glucose-6-Phosphate Dehydrogenase Deficiency, published in JIMD reports in 2017. She presented a poster titled “The Super Responders: Kuvan Provides Significant Dietary Liberalization in 17 of 72 PKU Patients” at GMDI in 2018.
Outside of her clinical responsibilities, Grace has been an active member of GMDI since 2016. She initially joined the technology committee in 2018 and stepped into the co-chair role in 2019. In this position she helps manage the many facets of MetabolicPro. She participated in a webinar earlier this year detailing the function of MetabolicPro for the GMDI membership.
Grace has shown great enthusiasm toward her leadership in her metabolic career to-date. She is a great role model for other dietitians who are just beginning their journey in metabolism. She represents the future of GMDI leadership.”
The Hayward Genetics Center at Tulane University Health Sciences Center is an interdepartmental multidisciplinary program providing state-of-the-art service, education, and research in the full spectrum of diagnosis, counseling and management of genetic disorders.
The faculty of the Hayward Genetics Center includes clinical and basic scientists who specialize in the various areas of human genetics. The faculty includes geneticists who are board certified by the American Board of Medical Genetics in all subdisciplines of Medical Genetics (Clinical Genetics, Clinical Biochemical Genetics, Clinical Cytogenetics, Clinical Molecular Genetics and Ph.D. Medical Genetics).Read More
Additional faculty members include research and basic scientists with expertise in biochemistry and molecular biology as well as physicians who are board-certified in various other medical specialties including Maternal/Fetal Medicine, Pediatrics, and Neurology, and Internal Medicine.
The Hayward Genetics Center is accredited as a training program by the American Board of Medical Genetics (ABMG) and is also accredited by the Accreditation Council for Graduate Medical Education (ACGME) to provide postdoctoral training (years four and five) in M.D. clinical genetics.
