What was initially envisioned as an all-encompassing support group for South Africans affected by rare conditions (or those who remain undiagnosed) has evolved into a formally registered NPO that is internationally recognised for its advocacy efforts. As a result, the management and oversight of the organisation has been formalised.
Each board member brings with them expertise and knowledge in various aspects of business as well as life-experience and personal understanding of rare diseases and their impact on patients, families, stakeholders and society at large.
KELLY DU PLESSIS
MOM. ADVOCATE. LEADER.
Kelly du Plessis is the CEO & Founder of Rare Diseases South Africa which was born out of necessity when her oldest child was diagnosed with Pompe Disease in 2011 at 11 months of age. Having dedicated her life and career to furthering the plight of those impacted by rare diseases in developing countries, Kelly serves on various boards and committees which focus on improving the quality of life for rare patients.
Kelly has taken rare disease policy and patient advocacy to new heights in South Africa and has presented at various national and international conferences to raise awareness and create a new narrative in terms of treatment and access for rare patients. Kelly has been awarded various awards and accolades for her contribution to healthcare both locally and abroad.
DIGITAL MARKETER. BRAND CUSTODIAN. ADVENTURE SEEKER.
Nikki is a passionate digital media specialist with both her undergraduate and postgraduate degrees in marketing. She currently heads up a paid media department at one of the fastest growing agencies in Europe and has used her knowledge of brands and media to assist in building and developing RDSA over the years.
She is one of the founding members of RDSA and has been strategically involved in the growth, evolution and transformation, not only of the organisation, but also the lives of those living in South Africa with rare conditions.
DR HELEN MALHERBE
MOM. RESEARCHER. RDSA DIRECTOR.
Helen became part of the rare disease community in 2004 when she lost her first child, Madeleine, to Trisomy 18 (Edwards Syndrome), and soon after established a contact point for families in South Africa affected by the same condition. In 2017, Helen completed a PhD to investigate the renewed need for the care and prevention of congenital disorders in South Africa, from which 13 scientific articles have been published to date.
Helen was Honorary Chair of Genetic Alliance South Africa (GA-SA), a non-profit, membership organisation uniting stakeholders relevant to the care and prevention of congenital disorders (CDs) until April 2020 when GASA was integrated into RDSA. Helen was appointed as an honorary RDSA Director overseeing Research and Epidemiology.
MOM. CONTENT PRODUCER. ENTREPRENEUR.
At the age of just 32, Roxy Burger has achieved what many fail to do in a lifetime. Having graduated with a Bachelors Degree in Audiovisual Production Management, Roxy is as talented behind the camera as she is in front of it and is an avid producer, presenter, radio DJ and reality show participant. She too, is the mom of a rare warrior and utilises her reputation and following to advocate and create awareness of rare diseases.
MOM. PHARMACIST. ADVENTURER. ACTIVIST.
TV presenter, CEO, and Adventurer are just some of the impressive titles associated with Nicole Austin. She is the Survivor SA Season 7 runner-up, Mrs South Africa 2018, a qualified pharmacist, a serial entrepreneur and mom to a Rare warrior after her daughter was diagnosed with a life-limiting rare disease, Cystic Fibrosis, at just 6 weeks of age.
With a passion for health and preventative medicine, Nicole uses her mobility and fitness to raise awareness for those without full health, by participating in mountain climbs, sporting events and outdoor adventures all over the world – with her intention to liberate courage in others to do the same.