MEET THE BOARD
Rare Diseases South Africa (RDSA) had humble beginnings – six individuals sitting around a small wooden dining room table with an idea and a dream to make the world just a little better for those living with rare conditions. Fast forward seven years: what was initially envisioned as an all-encompassing support group for any South African affected by a rare condition (or 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 also needed to be formalised.
RDSA CEO, Kelly du Plessis and founding member, Nicola Stergiopoulos, remain on the board whilst four additional members – all new to the board but not new to the organisation – join forces (and combine skills) with the intention of driving the organisation successfully through the next chapter in its history. 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 at 11 months old. 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.
In six years, 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. Understanding the isolation and lack of support surrounding a rare disease diagnosis, providing a safe place for patients as well as families, and improving patient-centred care has become her passion. With over 6500 patients/families impacted by rare diseases having been assisted over the past six years, Kelly has ensured that the patients voice is never forgotten.
Kelly was awarded the African Leadership Award for healthcare in December 2016 in Mauritius. Other recent achievements include the successful launch of RareX (the first Rare Disease conference in Africa), founding an African alliance for rare diseases (Africa-Rare.org), as well as implementing International Rare Disease Day in South Africa since 2010, an awareness campaign that reached over 17million South African’s in 2014.
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 RDSA over the years. She is one of the founding members of RDSA and has watched the organisation grow, evolve and transform, not only the organisation, but also the lives of those living in South Africa with rare conditions.
"I am so proud of what the organisation has managed to achieve in a relatively short amount of time and I know that with the diverse skills and passion of the new board of directors that Rare Diseases South Africa will continue to grow from strength to strength and transform the lives of patients and their families in South Africa."
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. As a result of her personal experience and wanting to make a difference in this area, Helen completed a PhD in 2017 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 March 2020. Following the dissolution of GA-SA and its integration into RDSA In April 2020, Helen was appointed as an honorary RDSA Director overseeing Research and Epidemiology. Helen also continues her academic work as a post-doctoral research fellow at the KZN Research Innovation and Sequencing Platform (KRISP) at the University of KwaZulu Natal.
Medical Technologist. Pharmaceutical Specialist. Consultant.
Erika qualified and practiced as a Medical Technologist for five years prior to joining the pharmaceutical industry, and has over 26 years’ experience working with leading global Pharmaceutical companies Roche, AstraZeneca, Shire and Takeda. She has covered various commercial roles with South African and/or Sub-Sahara responsibilities across a variety of specialty therapeutic areas including Oncology, Rare Diseases , GI, Immunology, Rheumatology, Renal Anaemia , Asthma, Diabetes, Anaesthesiology, Anti-invectives & Critical Care.
She is currently self-employed and operates as an Independent Consultant, enabling her to bring a wealth of experience and knowledge to RDSA. She was introduced to the rare disease community in 2017 in her role as Country Lead for Shire pharmaceuticals and developed a strong desire to make a difference to people living with rare diseases.
“It is my honour and privilege to join RDSA and look forward to working with this team of passionately devoted individuals in supporting our rare disease community in South Africa.”
Mom. Pharmacist. Adventurer. Activist.
TV presenter, CEO, and Adventurer are just some of the impressive titles associated with Nicole Capper. 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.
At just six weeks old her daughter was diagnosed with a life-limiting, rare disease, Cystic Fibrosis. This was a major catalyst for change in her life, and led her to enter and subsequently win the Mrs South Africa competition. As an advocate for women’s rights, Nicole believes she had a choice: to allow a disease to steal her purpose, using it as an excuse for complacency; or to consciously go after her dreams despite it, and in so doing, show her children that nothing can hold them back from achieving their goals.
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.
“I have never achieved anything great alone. I know that our best lives are those centred around collaboration. This breeds innovation. And this brings forth empowered change. I believe in embracing truth and authenticity, and by sharing my story and perspective I hope to ignite purpose, make a tangible difference, and inspire others to build upon their own legacy with every cumulative word and action. Woven together, our individual legacies can create a visionary tapestry of growth.”
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.
Roxy’s latest online endeavour is one she feels passionately about: - a thoughtfully curated content hub for her to express herself in longer form content, online. This portal is an extension of Roxy’s digital presence and encompasses all facets of her life and loves.
“I am incredibly proud of what I have achieved this far and attribute much of my success to the fact that I am have always remained authentic and true to myself. It seems fitting then to accept a position on a board which has become such a significant part of my life and for whom I hope my input and insight may impact positively.”