Prof Alex van den Heever (MA economics from the University of Cape Town) holds the Chair of Social Security Systems Administration and Management Studies at the Wits School of Governance. He has worked in the areas of health economics, public finance, governance and social security since 1989. His work largely focuses on strategic policy research for social security and health systems. Professionally He has worked for the Department of Finance (which now forms part of National Treasury), the Industrial Development Corporation, the Centre for Health Policy (WITS), the Gauteng Department of Health, Deloitte & Touche and the Council for Medical Schemes. He has also formed part of various inquiries in the fields of health and social security including the Malamet Commission on Medical Schemes, the Taylor Committee of Inquiry into Comprehensive Social Security, the Ministerial Task team on Social Health Insurance, the Health Market Inquiry. He has also chaired two expert panel investigations into a basic income support grant for South Africa supported by the International Labour Office. He has also served on various official bodies, including the Council for Medica Schemes and the Medicines Pricing Committee.

Alexandra Heumber Perry

Alexandra Heumber Perry has been appointed Chief Executive Officer of Rare Diseases International (RDI ) in June 2023. She brings 20 years’ experience in global health with demonstrated capabilities in patient advocacy and multi-stakeholder partnership, focusing initially on neglected and vulnerable patient populations, notably with Drugs for Neglected Diseases, Médecins sans Frontières, and Union for International Cancer Control and more recently advocating on behalf of specific communities including neurology, myalgic encephalomyelitis, obesity, and haemophilia.  Operating out of Geneva for 10 years following 10 years in Brussels, Alexandra conveys to RDI her considerable experience leading initiatives with multidisciplinary and remote teams and working with international and European institutions, government representatives from across the world, patient groups, and the private sector.

Belinda Nell

Belinda Nell has been actively involved in gaining affordable access to the lifesaving modulator treatments for the South African Cystic Fibrosis community since 2019. Her passion and determination to achieve this goal is due to her two sisters being diagnosed with the genetic disease in the early 90s and spending 35 years visiting and nursing her sisters in public and private hospitals. Unfortunately, both siblings passed away. Belinda is a member of Vertex Save Us, the CF Buyers Club, the CNFC and global CF patient advocate. She has featured in numerous international media articles and presented at various events. Belinda is a representative for South Africa in international stakeholder meetings and communicates with various associations and international medical professionals for medical research and knowledge sharing purposes. Belinda assists journalists in creating global media exposure to South Africa's plight in obtaining access to affordable medicines.

Chris Hendriksz

Chris Hendriksz, MD, is extra ordinary Professor of Paediatrics and Child Health at the Steve Biko Academic Unit, University of Pretoria and  extra ordinary Professor of Human Metabolomics,  NorthWest University, Potchefstroom, South Africa. He is currently employed by Nestle Health Science as Global Clinical Development Lead for Rare Diseases, IEM and Innovative Pharmaceuticals based in Switzerland.

He is the medical and strategic advisor for " A Rare Cause" a non profit organisation based in United Kingdom which supports rare disease service  developments in LMIC.

His publication list contains more than 200 peer reviewed publications with the majority on Lysosomal Storage Disorders numerous ones related to clinical trials , Quality of Life, clinical guidelines  and review papers as well as several book chapters in the field of inborn errors of metabolism.

Prof Chris Vorster

Prof Chris Vorster qualified in 1998 as a medical doctor and in 2007 as a specialist in chemical pathology. He worked in the private health care sector for several years before joining the North-West University (NWU) in 2010. He is currently the director of the Centre for Human Metabolomics (CHM), a research and commercial entity at the NWU, of which the aim is to establish sophisticated metabolomics infrastructure and expertise in South Africa. In this capacity he oversees:

1)   The National Metabolomics Platform established by the Technology Innovation Agency of South Africa (TIA),

2)   Diagnostic services for inherited metabolic diseases and Newborn Screening,

3)   Several national and international contract research projects and

4)   The rare diseases Biobank at the CHM.

In addition to his director responsibilities, he works as a pathologist and interprets and signs out laboratory reports on a daily basis. His own research interests are in inherited metabolic diseases, small molecule method development and nanodiagnostics.



Dr. David Pearce

Dr. Pearce is an internationally recognized leader in a number of areas. He has published over 100 research papers on Batten disease. He oversees an international registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS).   He has served on numerous NIH review committees, has organized rare disease workshops for the National Institute for Neurological Disorders and Stroke (NINDS) arm of the National Institutes of Health (NIH). He presented at numerous international meetings on rare disease, precision medicine, and use of electronic medical records for biomedical research. He is currently chair of the consortium assembly for the International Rare Diseases Research Consortium (IRDiRC) that represents funding agencies, companies, and patient advocate groups representing approximately 80 countries.  

As President of Innovation & Research at Sanford, he oversees the development of research programs, including more than 450 researchers, eight research centers and more than 300 ongoing clinical trials.

Elliot Makhathini

Elna Conradie

Dr Conradie is an experienced Professional Chemist with a PhD in Environmental Science and Management, currently specialising in Biobanking and Quality Management at the North-West University's Centre for Human Metabolomics. She bring a wealth of experience from my previous role as a Compliance Officer at a SANAS accredited Pharmaceutical Lab and as ISBER Director-at-Large for the EMEA region. Her passion lies in creating awareness for rare diseases in South Africa and the importance of establishing a rare disease biobank on the African continent. She is skilled in ethical application processes, quality management, biobank management and development, and analytical chemistry.

Emma Kalk

Associate Professor Emma Kalk is a clinical epidemiologist with a focus on operational research in maternal and child health. Her current interests include pharmacovigilance and surveillance in pregnant and breast-feeding women with an emphasis on antiretroviral and anti-tuberculosis therapy. She manages the Pregnancy Exposure Registry in Cape Town (a sentinel-site of the South African Pregnancy Exposure Registry) which is supported by a larger population-level database. This involves collaborations with pregnancy registries nationally within the South African initiative and regionally in Kenya via IeDEA-East Africa. Dr Kalk is a founding and active member of the sub-Saharan African Congenital Anomalies Network (sSCAN).

Dr Engela Conradie

Dr Engela Conradie is the Project Manager for the BioBank at the Centre of Human Metabolomics. She hold a Ph.D. in Physiology with a special interest in the intersection between chemistry and human health. Using her unique background in chemistry, physiology, and nutrition, she approaches problem-solving and project management with a holistic perspective, aiming to make a positive impact on human health. She is always eager to connect with healthcare professionals who are interested in assisting the BioBank to expand its sample variety.



Fatima Suleman

Fatima Suleman is a Research Professor in the School of Health Sciences, and Director: World Health Organization Collaborating Centre for Pharmaceutical Policy and Evidence Based Practice, University of KwaZulu-Natal. She is a former Prince Claus Chair of Development and Equity: Affordable (Bio)Therapeutics for Public Health (until September 2018) at Utrecht University, and a Fulbright Alumnus (Fulbright Scholar 2002-2004). Her work has concentrated in the area of pharmaceutical policy, with a focus on ensuring affordability and access to medicines, both for adults and children and across a range of disease conditions. Her research has looked at the impact of implementing pricing policies within countries in terms of reducing costs as well as improving access. Collaborative research has focused on measuring affordability for medicines, and for specific measures to assess access to medicines for children. Other access to medicine projects have looked at alignment of national essential medicines lists with the World Health Organization’s Essential Medicines List, as well as opening up ownership of pharmacies to non-pharmacists in an effort to increase access. This work has led to technical advice being provided on pharmaceutical policy for several countries in Africa and Asia in the last 17 years. She was appointed by the Minister of Health as member (2010) and then chair (2014-2020) of the South African National Medicines Pricing Committee. She is appointed to the World Health Organization's Expert Advisory Panel on Drug Evaluation (2017 – 2025); and served on several WHO expert committees. 

Francois van der Westhuizen

Francois is a researcher on inherited metabolic disease, with a specific focus on the aetiology and diagnosis of mitochondrial disease in South Africa. He is currently coordinating a SA team of medical researchers as part of the International Centre for Genomic Medicine in Neuromuscular Diseases (ICGNMD).

Starting his academic career in 1993, he is currently the Deputy Dean for Research and Innovation in the Faculty of Natural and Agricultural Sciences, NWU. After receiving his PhD in 1998, his research focus narrowed to mitochondrial disease. For this pupose he completed two extensive international research visits: a postdoctoral fellowship from 2000 to 2001 at the Nijmegen Centre for Mitochondrial Disorders, The Netherlands; and a sabbatical at the Mitochondrial Research Group at Newcastle University, UK in 2011.  In 2002 he established the Mitochondria Research Laboratory at the NWU.  This group specialises in mitochondrial dysfunction and metabolism in health and disease.

Dr Ilse du Preez

Dr Ilse du Preez graduated with a PhD in Biochemistry from the North-West University (NWU) in 2012. In 2019, following two post-doctoral terms, she was appointed as a Senior Lecturer at the NWU’s Centre for Human Metabolomics and is currently the acting Director of this entity.   Dr Du Preez holds an NRF C rating, with human metabolomics as a research focus.  She has published 30 research papers, presented her work at several conferences, actively acts as a reviewer and editor for various accredited scientific journals, and supervises post-graduate students and post-doctoral fellows.

Mr Jaco Oosthuizen

Mr Jaco Oosthuizen is a Senior Medical Scientist in the Division of Human Genetics at UFS and NHLS Universitas in Bloemfontein. He has a decade of experience in variant screening for the identification of pathogenic variants that cause a predisposition to hereditary breast and ovarian cancer (HBOC) in the South African population. His duties within the NHLS also involve supervising the Molecular Cytogenetics platform relating to diagnosing common aneuploidies and copy number variants in Disorders of Developmental Delay. Currently, he is a PhD candidate in Human Genetics at UFS, with his research focusing on introducing genetic testing in primary health care to enable point-of-care testing and fine mapping the population structure of genes involved in the homologous repair pathway of HBOC patients in the South Africa.

Kelly Walsh

 Kelly Walsh is a young motivational speaker and accessibility activist who aims to change the way South Africans perceive people with disabilities. Her motto is "Life is one big adventure, and I just want to live it the best I can!" Despite being diagnosed with Spinal Muscular Atrophy at the age of one and given a life expectancy of only 5 years, Kerry has managed to live a seemingly normal life, with a few extra complications along the way. However, these challenges have only made her try harder and become a powerful role model. 

At the age of 17, she did her first speaking engagement at Parktown Boys to promote casual days. This experience inspired her to start @KmotivationSA. Kerry's mission is to inspire and empower people with disabilities to live their lives to the fullest and break down the barriers that society places on them.


Kim Ballantine

Kim Ballantine is from Johannesburg is an industrial and research psychologist, business and life coach, speaker, writer, and author. She is a Director of Camber Coaching as well as non-executive Board Member of the Mental Wellness Initiative. She has over 35 years’ experience in the field of people development, focussing on mental health and in particular compassion fatigue and burnout from a Whole Brain Perspective. For a period of 10 years, she dealt with complete voice loss and cancer and has captured her journey in her memoir Hot Tea and Apricots. Her passion is to see people and organisations move beyond their self-limiting beliefs and reach their God-given potential.

Laurenne James
Lauren has extensive experience in both corporate and non-profit organisations. She established her first company while still at school; in the next ten years she created companies in the field of branding and marketing, developing wide-ranging expertise on brand creation, management, and governance.
Working with the Nelson Mandela Children’s Fund and the Nelson Mandela Foundation gave her exposure to non-profit work. A partnership with the Children’s Fund and Foundation followed, and in 2005 she was appointed Chief Operating Officer of the Breast Health Foundation. Her combination of business skills and non-profit experience led to the establishment of Prime Consulting, which assists non-profits develop sustainable and effective strategies, structures and processes.
Lauren has put her experience and knowledge to work building accredited course modules to assist non-profits; recently, under her guidance, Campaigning for Cancer has partnered with Friends of Cancer Patients to create the Patient Advocacy Incubator equipping patient advocacy organisations with professional and relevant skills.
Lauren represents Campaigning for Cancer on multiple local and international coalitions, such as the African Organisation for Research and Training in Cancer (AORTIC); the South African Health Technologies and Advocacy Coalition (SAHTAC); the Lymphoma Coalition(LC) an international alliance of 75 lymphoma patient groups across 42 countries, of which she is a director; and the Global Lung Cancer Coalition (GLCC).
Lauren has been invited to play a number of roles at national and international level. As just one example, she heads the Patient User Network, a network of 118 health-related patient groups. She is a signatory to the Presidential Health Compact.
Lauren has co-authored a number of academic papers and is in demand locally and internationally as a speaker on both cancer and patient advocacy. She’s boosting her own skills currently via a Health Technology Assessment course at the Faculty of Health Sciences, University of Adelaide.
Lauren Pretorius is CEO of Campaigning for Cancer, a patient advocacy organisation which she co-founded in 2008 to work for the promotion and protection of the rights of patients and those affected by cancer.

Laurenne James

Laurenne is a pharmacist by training qualifying at the University of Witwatersrand in 1996. After working for some years in the pharmaceutical industry in Quality Assurance and Marketing, she completed her Masters in Business Administration in 2007, with a focus on Strategy and Marketing at the WITS Business School.

After gaining experience in Exports, Project Management and Market Access, she completed a post-graduate diploma in Health Economics in 2017. Laurenne was always a supporter of Professional Societies, serving as Treasurer in both the PTCMA, and then ISPOR South Africa. In 2023, she was elected President of the ISPOR South Africa Chapter.

Laurenne’s involvement in these bodies has strengthened her determination to improve and add value to the Health Environment in South Africa, with a focus on Evidence-driven Decision-making for the benefit of the citizens of the country.

Laurenne is currently working for Janssen South Africa, in Market Access.

Dr Liam Bell

Liam heads up the D-CYPHR regional hub, a national molecular phenotyping facility based in Cape Town. D-CYPHR is a DIPLOMICS initiative in partnership with the CPGR and the IDM. Liam has been involved in proteomics for the past 15+ years.

Meliska Volschenk

Meliska Volschenk currently serves as the Head of Payer Solutions and National Accounts at Sanofi. She has 15 years’ experience in the pharmaceutical industry of which she has dedicated the last 8 to Rare Oncological Malignancies and Rare Diseases. For the past 4 years while representing the Innovative Pharmaceutical Association of South Africa (IPASA), she has been an active participant of the Rare Diseases Access Initiative (RDAI) which aims to enhance equitable access to care for patients with rare diseases, regardless of the healthcare sector the patients seek care in.

Prof Michéle Ramsay

Director of the Sydney Brenner Institute for Molecular Bioscience (SBIMB), Professor in Human Genetics and South African Research Chair in Genomics and Bioinformatics of African Populations at the University of the Witwatersrand, Johannesburg. Her research centres around the role of genetic variation in diseases in African populations. She is committed to promoting research excellence and strengthening capacity in the fields of genomics and precision medicine. Michèle is chair of the Academy of Science of South Africa’s Steering Committee to draft a national Code of Conduct for Research to inform the interpretation of the Protection of Personal Information Act.

Dr Michelle Meiring

Dr Michelle Meiring is a Palliative Care Paediatrician who has worked in this field for nearly 20 years.  She is the CEO of Paedspal, an NGO that provides a consultative paediatric palliative care service to public and private hospitals in Cape Town. She convenes the Post-Graduate Diploma in Paediatric Palliative Care at the University of Cape Town. She has presented at several local and international conferences and was most recently one of 4 editors of the latest edition of the Oxford Textbook on Palliative Care for Children. A long-standing child health and palliative care advocate since her “Paeds HIV-days”, Dr Meiring chairs a national network for Children’s Palliative care known as PatchSA and has been involved at provincial and national levels in policy making in palliative care in South Africa.

Prof Mignon Mcculloch  

Full Professor & Head of Clinical Unit of Paediatric Nephrology and Solid Organ Transplantation (including kidney, liver and heart) at Red Cross War Memorial Children’s Hospital and the University of Cape Town.

She is current President of the South African Transplantation Society and Past-President of the International Paediatric Transplantation Society (IPTA)

Also Past-President of the South African Paediatric Association (SAPA).

She is a Nephrologist & Paediatric Intensive Care (PICU) consultant and interests include Paediatric Nephrology and Care of Critically ill children specifically with AKI requiring all forms of Dialysis and Transplant in infants and children. This includes training Fellows and outreach work in Africa developing paediatric renal and transplant programs.

She is also an amateur surfer.