Chair: Helen Malherbe
Helen is a focal person for Trisomy 18 (Edwards Syndrome) having lost her first child, Madeleine, to the disorder in 2004. She became involved in GA-SA in mid-2014 and is passionate about ensuring that all those affected or at risk of congenital disorders have equal access to appropriate genetic services. She believes the first steps in achieving this are through uniting the patient support sector, educating health care professionals and raising the political profile of congenital disorders as a health care issue in South Africa. Originally a plant geneticist and a science communicator, she was conferred her PhD in April 2017 which investigated the ‘renewed need for services for the care and prevention of congenital disorders in South Africa’ at the University of KwaZulu Natal (UKZN). She is currently a Post-Doc Research Fellow at UKZN.
As the GA-SA Chair, Helen is the face of the Alliance and is leading the strategic development process. While she is involved in all areas of GA-SA operations, she is particularly focused on developing networks and relationships with patient support groups, the medical genetics community, government and potential donors.
Contact Helen: firstname.lastname@example.org