Sickle Cell Disease Genomics Network of Africa
March 15, 2019
SICKLEGENAFRICA JOINS RARE DISEASE GHANA AT THE GENOMICS AND RARE DISEASE SYMPOSIUM
More than 350 million people are affected by rare diseases globally. 1 in 20 people may be affected by a rare disease at some point in their lives. (https://www.nzord.org.nz/helpful-information/rare-disease-facts-and-figures) Rare Disease Day is, therefore, the global event held to raise awareness and support for rare diseases among the general public, medical practitioners and decision makers. It is held on the last day of February and promoted by Rare Diseases Europe (EURORDIS), an international patient-driven alliance of rare disease patient organizations.
On Thursday, the 28th February 2019, SickleGenAfrica joined Rare Disease Ghana to commemorate the day with a symposium. Rare Disease Ghana is an initiative with the mission to improve the quality of life of families affected by Rare Diseases in Ghana through advocacy, creating awareness, research, patient support, and partnership
The symposium, held under the theme: "Bridging Gaps Between Health and Social Care", brought together physicians, scientists, researchers, patients, and rare disease advocates.
Professor Solomon Ofori-Acquah, Director of SickleGenAfrica who gave the keynote address at the symposium said that the theme should be a wakeup call to all Ghanaians and policymakers in particular.
He applauded the courage of Rare Disease Ghana for taking up the task of advocating for rare diseases and rare disease patients in Ghana. He re-coined the theme as "The courage to bridge gaps between health and social care." He also encouraged researchers to probe further and ask hard questions.
Other speakers at the symposium included: Prof. Ebenezer Badoe, HOD-Department of Child Health, University of Ghana Medical School, Dr. Emmanuel Ameyaw, Department of Pediatrics, Komfo Anokye Teaching Hospital, Dr. Todor Arsov, Department of Immunology and Infectious Disease, Australian National University, Dr. Abena Tannor, Department of Family Medicine, Komfo Anokye Teaching Hospital, Amanda J. Budge, Multikids Africa and Mr. Samuel Agyei Wiafe, Founder and Executive Director of Rare Disease Ghana Initiative.
Mr Agyei Wiafe, Founder of Rare Disease Ghana, in his address stated that, the vision of his organization is to become the voice of the patients, caregivers and researchers, and coordinate rare diseases in Ghana. He expressed disappointment at the lack of data on rare diseases in Ghana. This conundrum hinders informed decision making in the area of rare diseases.
Dr David Nana Adjei, Study Coordinator for SickleGenAfrica ended the day with a presentation on the overview of SickleGenAfrica network and the role it plays in genomics.
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SickleGenAfrica is funded by NIH Common Fund Award / NHLBI Grant Number U54HL141011
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