Every Mandela Day, South Africans answer the call to make a difference. Across the country, people dedicate 67 minutes to uplifting others by serving meals, painting schools, planting trees, mentoring young people, and supporting those in need.
But what if your 67 minutes could leave a legacy of hope? What if they could help save up to three lives? This Mandela Day, the South African National Blood Service (SANBS) is inviting South Africans to transform a simple act of generosity into a lifetime of impact by donating blood.
Unlike many acts of service, the impact of a blood donation doesn’t end when you leave the donor centre. It continues in emergency rooms, operating theatres, maternity wards and hospital beds across the country, where donated blood gives someone another chance to recover, celebrate another milestone, and experience another tomorrow.
Every lifesaving blood transfusion begins with one person making one simple decision: to show up.
That’s why SANBS is encouraging more South Africans, especially first-time donors to become part of a community of everyday heroes whose generosity gives strangers a second chance at life.
“Whether you have donated before or have always wondered if you should, Mandela Day is the perfect opportunity to take that first step,” says Monique Schreiner, Senior Manager: Donor Relations at SANBS. “The donation process is safe, simple and takes less than 67 minutes from start to finish. Yet those minutes could mean a lifetime for someone else.”
Nelson Mandela believed that each of us has the power to make a meaningful difference through service. Blood donors live that legacy every day – not for recognition or reward, but because they understand that, somewhere, someone is depending on the kindness of a stranger.
This Mandela Day, let your 67 minutes create a lifetime of impact.
When 12-year-old Eugene underwent a highly specialised facial reanimation procedure earlier this year, the surgery represented something profoundly human, the possibility of smiling for the first time.
Born with Moebius syndrome, a rare neurological condition that affects facial movement and expression, Eugene had spent his life unable to smile, blink properly or express emotion through facial movement. And while his story is emotionally powerful, it also shines a light on a far broader healthcare reality, the growing importance of highly specialised reconstructive surgery in restoring not only appearance but movement, function, dignity and quality of life.
At Wits Donald Gordon Medical Centre (WDGMC), reconstructive microsurgery is helping redefine what is possible for patients facing some of the most complex medical challenges, from congenital conditions and cancer to severe trauma and tissue loss.
Often misunderstood as a field focused primarily on cosmetic procedures, reconstructive microsurgery sits at the intersection of surgical precision, innovation and long-term patient rehabilitation. These procedures frequently involve transplanting tissue, muscle and nerves from one part of the body to another and reconnecting blood vessels, often measuring less than two millimetres in diameter, under microscopic magnification.
Leading this work at WDGMC is Dr Dimitri Liakos, a plastic and reconstructive surgeon with fellowship training in reconstructive microsurgery and super microsurgery.
Dr Dimitri Liakos, a plastic and reconstructive surgeon with fellowship training in reconstructive microsurgery and super microsurgery.
“These procedures are not simply about appearance,” says Dr Liakos. “They are about restoring function, movement and ultimately helping patients regain parts of their lives that were lost or that they were born without.” In Eugene’s case, surgeons transferred functioning muscle together with its blood and nerve supply into the face, reconnecting these delicate structures under a microscope so movement could gradually return over time.
Eugene’s procedure was facilitated through the support of the Smile Foundation, which works to improve access to reconstructive surgery for children requiring specialised care.
“We are deeply grateful to Wits Donald Gordon Medical Centre and Dr Dimitri Liakos for their dedication in supporting Eugene on his journey,” says Tarri Parfitt, CEO of Smile Foundation. “It is truly remarkable to open a world-class facility to this family and provide care at the highest level of expertise. Facial reanimation surgery is profoundly life-changing. For Eugene, it represents the possibility of expression, connection and a future he may never have imagined before. For Smile, it was also an invaluable opportunity for other surgeons to learn from such a rare and complex case, turning one surgery into the potential to help many more children like Eugene. We highly value the opportunity to work alongside Wits Donald Gordon Medical Centre on cases such as this and look forward to helping many more children together.”
While these procedures are performed in highly specialised centres globally, access to this level of care remains limited in South Africa due to the advanced infrastructure, multidisciplinary expertise and years of specialised training required to perform them successfully.
For WDGMC, however, the ability to perform these surgeries forms part of a broader commitment to advancing highly specialised care within South Africa’s healthcare system while simultaneously strengthening academic medicine and specialist training.
As an academic hospital affiliated with the University of the Witwatersrand, WDGMC has become an important training environment for complex reconstructive microsurgery in South Africa. The hospital recently established the country’s first reconstructive microsurgery fellowship programme for qualified plastic surgeons, helping expand the number of specialists capable of performing these highly technical procedures.
“We have a responsibility not only to perform these surgeries, but to transfer the skill,” says Dr Liakos. “If we do not train future microsurgeons, access to this level of specialised care will remain limited.”
According to Dr Liakos, successful reconstructive microsurgery depends not only on surgical expertise but on building the right multidisciplinary environment around patients.
“To do these cases successfully, you need a dedicated team and an environment that functions seamlessly,” he explains. “Microsurgery is never a one-person effort. It is the nursing staff, anaesthetists, theatre teams and systems around you that make these outcomes possible.”
For surgeons working in the field, the impact of reconstructive microsurgery extends far beyond the operating theatre.
“These surgeries can take 10 or 12 hours. They are physically and emotionally demanding,” says Dr Liakos. “But when you step back and realise that what you are doing may change the course of a person’s life forever, it gives meaning to every moment spent in theatre.”
As WDGMC continues to build on its reconstructive microsurgery programme and the country’s first fellowship of its kind, the hospital is helping shape a future in which South African patients can access world-class reconstructive care close to home and in which the specialists capable of providing that care are trained locally.
Johannesburg, 25 June 2026 – As South Africa concludes Youth Month, the South African National Blood Service (SANBS) is celebrating a new generation of life-savers who are helping to secure the country’s blood supply through regular blood donation.
This year’s World Blood Donor Day was commemorated under the theme, “Give blood, give hope: together we save lives,” highlighting the critical role voluntary blood donors play in strengthening healthcare systems and saving lives. For SANBS, the theme has resonated strongly with a growing number of young South Africans who are choosing to become regular blood donors and make a meaningful contribution to their communities.
Recent SANBS data reveal that 43.27% of its donor panel comprises regular donors aged 16 to 30, reflecting a positive shift in donor demographics and a growing culture of volunteerism among young people.
Historically, blood donation has largely been sustained by older generations. However, SANBS has seen a notable increase in younger people showing interest in donating blood, helping to ensure a sustainable blood supply for future generations.
The organisation has also recorded encouraging growth in donor diversity, including an increase in black blood donors, contributing to a donor base that is increasingly representative of South Africa’s population.
Blood remains an essential resource in healthcare, as a stable blood supply enables hospitals and healthcare facilities to respond swiftly to emergencies and deliver life-saving treatment to patients in need. A reliable blood supply is therefore fundamental to the effective functioning of any healthcare system and the overall wellbeing of communities.
Commenting on the encouraging trend, SANBS Reputation and Communications Manager, Sifiso Khoza, said the growing participation of young people demonstrates the positive impact that youth can have on society.
“Young people have always been at the forefront of driving positive change in South Africa. We are encouraged by the growing number of youth who are choosing to become regular blood donors and embracing the opportunity to make a difference in others’ lives. Their commitment reflects the spirit of compassion, active citizenship, and hope that both World Blood Donor Month and Youth Month seek to celebrate.”
Khoza added that maintaining a stable blood supply depends on the continued support of both existing and first-time donors.
“Blood donation is one of the simplest yet most impactful ways to give back to society. Every donation has the potential to save lives, and we encourage more young South Africans to join this community of life-savers. By donating blood, they are helping to build a healthier, stronger, and more resilient South Africa.”
As Youth Month draws to a close, SANBS is calling on eligible South Africans to become regular blood donors and play their part in ensuring that blood is available for patients whenever and wherever it is needed.
To become a blood donor, individuals must be between the ages of 16 and 75 years, weigh at least 50kg, lead a safe and healthy lifestyle, and be in good general health.
For Bafana Manyisa, strength doesn’t look the way most men are taught it should. It’s not toughness or stoicism or an unshakeable composure. Strength, he says, looks like sitting with a patient who needs reassurance. It looks like supporting a new overwhelmed father navigating the parenting journey for the first time. It looks like simply being present for your family when they need you most.
As a registered nurse, Operational and Outreach Team Leader at Dis-Chem and Dis-Chem Baby City Clinics, husband and father, Manyisa has spent his career learning what few South African men are encouraged to admit: that care is one of the most demanding forms of strength there is.
From mechanics to healthcare
Raised in Mohlakeng on Johannesburg’s West Rand, Manyisa’s path to nursing was unconventional. His childhood dream was mechanical engineering. He spent his early years studying motor mechanics, working in workshops, enjoying the technical precision of the work. But something was missing.
“I realised that what fulfilled me most was helping people,” he explains.
It took his older sister, a primary healthcare nurse practitioner to recognise what he didn’t yet see in himself, a natural capacity for compassion. She urged him to apply for the R425 nursing programme. “From the moment I started training, everything aligned,” he says. “I fell in love with nursing because it gave me the opportunity to make a real difference in people’s lives, especially during their most vulnerable moments.”
The values that shaped his approach to healthcare were rooted long before he entered any clinical setting. Growing up in Mohlakeng taught him resilience, humility, and the importance of community lessons he says no textbook could replicate. “Our community taught us to look out for one another,” he reflects. “Simple acts of kindness, respect for elders, and serving others became part of who I am.”
The weight of witnessing
Those values were tested most severely during his time at Eyethu Yarona Clinic under the Gauteng Department of Health. Faced with water shortages, electricity interruptions and stock limitations, the clinic ran on compassion and improvisation. It was difficult work in difficult conditions, yet it was there that Manyisa experienced one of the defining moments of his career.
After helping an elderly patient collect her chronic medication, she paused and told him something that has stayed with him ever since: “You make a difference in our lives. You don’t just give us medication, you treat us with care.”
That moment crystallised his understanding of nursing and later, fatherhood. “It’s not about treatment alone,” says the father of one. “It’s about dignity, empathy, and human connection.”
A different kind of strength
Working in healthcare has given Manyisa an intimate view of the pressures South African men carry in silence. Financial stress. The relentless expectation to provide. The demand to always appear strong. He sees men shoulder these burdens alone, asking for nothing, showing nothing.
His message to them is direct: asking for help is not weakness. Vulnerability is not failure.
“Too many men believe they have to carry everything on their own,” he says. “Real strength comes from being honest, seeking support when you need it, and taking care of yourself so that you can take care of those who depend on you.”
The qualities that make a good healthcare professional – empathy, resilience, patience, and care are, he believes, the very same qualities that make a good father. This Father’s Day, he’s actively encouraging more men to recognise this, to become more involved in their families’ health and wellbeing. To support partners during pregnancy. To take an active role in their children’s healthcare journeys. To show up.
The strongest thing
“People may forget what you said or what you did,” Bafana reflects. “But they never forget how you made them feel. Nursing teaches you resilience and compassion in ways no salary ever could.”
His story challenges a narrow version of masculinity that has done South African men no favours. Men can be leaders and caregivers. They can be strong and compassionate. They can provide and nurture.
Perhaps, he suggests, the strongest thing a man can do is simply care.
The South African National Blood Service (SANBS) and J’Something Bring Blood Donation into the Culture
What if saving a life was part of your weekend plans?
On 6 June 2026, music, culture, community and purpose will come together at Artistry JHB as the South African National Blood Service (SANBS), musician and entrepreneur J’Something host One Day x SANBS Community Blood Drive a unique event designed to make giving blood more accessible, engaging and relevant to a new generation of South Africans.
Every day, blood donors help create more tomorrows for patients across the country. They make it possible for someone to celebrate another birthday, return home to their family, pursue their dreams, or simply get a second chance at life. Yet many South Africans who are eligible to donate have never taken that first step.
Through this purpose-driven partnership, SANBS and J’Something are bringing blood donation into spaces where people naturally connect, create and inspire one another. By blending culture, creativity and community impact, the One Day x SANBS Community BloodDrive aims to show that donating blood is not only life-saving it’s something everyone can be part of.
The result is more than a blood drive. It’s a day party with purpose, where every donation has the potential to save up to three lives.
Secure your spot at the blood drive by completing the quick eligibility screening below.
Whether you’re donating blood or simply coming through to support the movement, expect good music, great energy and a community united for a meaningful cause.
Johannesburg, 1 June 2026 – As the world prepares to commemorate World Blood Donor Day on 14 June, the South African National Blood Service (SANBS) is honouring the thousands of South Africans whose selfless blood donations continue to save lives every day.
Recognising June as a globally significant month for blood donor awareness, SANBS is proud to launch its bold new campaign, “Be The Lifeline – Give Blood. Give A Tomorrow.” The campaign forms part of this year’s World Blood Donor Day observance. It marks a dual milestone: celebrating 25 years of SANBS as a trusted lifeline for the nation, while paying tribute to the ordinary South Africans who have become extraordinary lifelines for patients and families across the country.
For SANBS, the campaign is a powerful reminder that behind every unit of blood donated is a future still unfolding.
From mothers safely holding their newborn babies for the first time, to accident victims receiving urgent emergency care, cancer patients continuing treatment, and children overcoming life-threatening illnesses, blood donors are the unseen force helping to protect countless tomorrows.
A tomorrow where a young adult learns to drive and experiences independence for the first time.
A tomorrow where a small business owner opens the doors to their first coffee shop.
A tomorrow where a child nervously walks into their first day of school.
Each moment made possible because someone chose to give blood.
According to SANBS CEO, Ravi Reddy, World Blood Donor Day serves as a powerful reminder of the impact of every donation.
“For 25 years, South Africans have consistently shown extraordinary generosity through blood donation. Every donor who walks through our doors becomes part of someone else’s tomorrow,” says Reddy. SANBS Reputation and Communication Manager, Sifiso Khoza, echoed this sentiment, highlighting the life-saving power of a single donation.
“World Blood Donor Day reminds us that behind every successful transfusion is a donor who chose to help someone they may never meet,” says Khoza. “Blood donation is one of the most powerful acts of humanity because a single donation can save multiple lives.”
This year’s campaign places a strong emphasis on trust, gratitude and recognition, honouring long-standing donors who have supported SANBS over the years, while encouraging more South Africans – particularly younger generations – to become regular blood donors.
Through the “Be The Lifeline” campaign, SANBS will spotlight real stories of donors, recipients, and healthcare workers whose lives have been transformed through blood donation, reinforcing the deeply human impact behind every unit collected.
Reddy says the organisation’s 25-year milestone extends beyond reflection, serving as a tribute to the millions of South Africans who have contributed to sustaining a reliable national blood supply. “We are deeply grateful to every donor who continues to choose compassion, kindness, and community through blood donation. Their contributions have helped SANBS remain a trusted lifeline for South Africans for the past 25 years,” he says.
As part of World Blood Donor Day, SANBS is calling on all eligible South Africans to join this life-saving legacy by donating blood and helping secure millions of tomorrows for patients in need.
“Blood cannot be manufactured. It can only come from people willing to give a part of themselves to save another life,” adds Khoza. “This World Blood Donor Day, we encourage South Africans to continue being the lifeline that so many patients depend on every day.”
As a professional photographer and mother of two young children, Claire had always been busy, but the long hours and constant fatigue felt like an occupational hazard. She never imagined that exhaustion could signal something far more serious than a demanding schedule.
Then, in January 2024, it happened: Claire blacked out at her desk while editing videos. It was her body’s final, unmistakable warning. What followed was a hospital stay, a bone marrow biopsy, and a diagnosis that would change her life forever. Claire had been diagnosed with blood cancer, specifically Myelodysplastic Syndrome (MDS), a serious bone marrow condition that, without treatment, can be fatal.
She was just 30 years old. And she was far from alone. Blood cancer remains one of the top five causes of cancer death in South Africa. Despite being potentially curable, countless patients never find their matching donor in time. Claire was determined not to become another statistic.
A Road Full of Obstacles
Claire’s path to diagnosis was not straightforward. Doctors initially attributed her worsening symptoms to iron deficiency, leaving her untreated as her condition quietly progressed. By the time MDS was correctly identified, the only viable path forward was a stem cell transplant.
While awaiting a donor match, Claire endured bi-weekly injections to keep her body stable, a gruelling holding pattern as her family and medical team searched for hope. That hope came through DKMS Africa, which successfully identified a fully matched, unrelated donor for Claire.
The first transplant, using cells from that 100% unrelated matched donor, was performed with great hope. Unfortunately, it was not successful.
Claire’s medical team was not deterred. Turning to family, they proceeded with a haplo-identical transplant, a “half-match” procedure using stem cells donated by Claire’s brother. This second transplant was successful.
Why Every Match Still Matters
Claire’s outcome is cause for deep gratitude and genuine celebration. But her journey also carries an urgent message that must not be lost in the relief of her survival.
Haplo-identical transplants, where stem cells are donated by a family member who is only a partial genetic match rather than a full one, can offer a path forward when a fully matched donor cannot be found. However, this option is not available or ideal for everyone. Not all patients have a suitable family donor, and even when they do, the procedure carries greater medical complexity and risk than a fully matched stem cell transplant.
For most patients, a 100% match from an unrelated donor remains the gold standard: the safest and most effective option. Yet only around 30% of patients find a compatible donor within their own family, meaning the remaining 70% depend entirely on a stranger’s decision to join the registry. The more people who register as potential donors, the greater the chance that every patient in need will find their match.
The critical shortage of registered donors, particularly from diverse ethnic backgrounds, means that for many, the search ends without a match. Despite blood cancer being potentially curable, countless patients never find their matching donor in time.
Every name added to the registry is a potential lifeline for someone, somewhere, waiting for their match.
A Family Restored
Today, Claire is recovering. Her children have their mother. Her family, who stood beside her through diagnosis, uncertainty, and two transplants, now share in a renewed sense of hope and possibility.
Her story does not end with survival. It continues with a plea to every person who has considered registering as a stem cell donor and hasn’t yet done so. “Help save others like me. We need more people to register as potential stem cell donors. Your registration could mean the difference between life and death.”
Cyclone Gezani caused extensive damage across the region, displacing thousands and severely affecting homes, public infrastructure, and healthcare facilities
Following the devastating cyclone that struck Madagascar’s east coast, Mercy Ships (www.MercyShips.org) has joined with national disaster response efforts in Toamasina (Tamatave) through the provision of essential relief supplies, in coordination with the government’s disaster management authorities.
Cyclone Gezani caused extensive damage across the region, displacing thousands and severely affecting homes, public infrastructure, and healthcare facilities.“In moments like these, partnerships and solidarity matter most,” said Nicholas Ahadjie, Country Director of Mercy Ships in Madagascar. “We are committed to supporting the national response and ensuring that assistance reaches communities where the needs are greatest.”
As part of its own immediate response, Mercy Ships has delivered 537 bags of rice, 1000 roofing sheets, and 1000 ready-to-eat meals. These supplies arrived in Toamasina and were officially handed over to the government’s Designated Disaster Response Coordination Body for distribution to affected communities.
The roofing materials will enable families, schools, and community health facilities to begin urgent repairs. The rice will be distributed to households impacted by the storm that still have functional cooking facilities, while ready-to-eat meals will provide immediate support to individuals and displaced families.Although the Mercy Ships hospital vessel Africa Mercy®, is currently undergoing scheduled maintenance in South Africa, preparations are underway for her return to Madagascar. Sometime this May, she is expected to resume surgical services and medical training programs in collaboration with the Ministry of Health.
“Our presence in Madagascar is on-going,” added Nicholas Ahadjie. “While the ship is in maintenance, our engagement with partners continues. We stand with the Malagasy people today and remain dedicated to strengthening healthcare capacity for the future.
”For several years, Mercy Ships has partnered with Madagascar to provide free specialised surgeries, professional medical training, and infrastructure support. The recent disaster will not stop the organisation’s ongoing support for the Malagasy people as it continues to help reinforce their national health systems.Distributed by APO Group on behalf of Mercy Ships.
ABOUT MERCY SHIPS:
Mercy Ships operates hospital ships that deliver free surgeries and other healthcare services to those with little access to safe medical care. An international faith-based organisation, Mercy Ships has focused entirely on partnering with African nations for the past three decades. Working with in-country partners, Mercy Ships also provides training to local healthcare professionals and supports the construction of in-country medical infrastructure to leave a lasting impact. Each year, more than 2500 volunteer professionals from over 60 countries serve on board the world’s two largest non-governmental hospital ships, the Africa Mercy® and the Global Mercy™. Professionals such as surgeons, dentists, nurses, health trainers, cooks, and engineers dedicate their time and skills to accelerate access to safe surgical and anaesthetic care. Mercy Ships was founded in 1978 and has offices in 16 countries as well as an Africa Service Center in Dakar, Senegal. For more information, visit www.MercyShips.org and follow @MercyShips on social media.
Since launching late last year, Össur South Africa’s ‘What’s Your Epic?’ campaign has gained strong traction, with six amputee athletes now deep into training for the 2026 Cape Epic (15–22 March). As preparations intensify, the campaign continues to rally South Africans around a powerful belief: that access to mobility is fundamental to dignity, independence, and opportunity.
Three amputee teams will line up at one of the world’s most demanding mountain biking events, not only to test their physical limits, but to raise awareness and funds for three South African non-profit organisations restoring mobility and independence to people living with limb loss or disability: Jumping Kids, Rejuvenate SA, and Zimele.
Over the past few weeks, the riders have been balancing rigorous training schedules with advocacy, fundraising, and community engagement, using the build-up to the Cape Epic to shine a spotlight on the everyday barriers faced by thousands of South Africans who lack access to basic mobility solutions.
“Since launching ‘What’s Your Epic?’, the response has been incredibly encouraging,” says Blignaut Knoetze, Managing Director of Össur South Africa. “What’s been most powerful is seeing how this campaign has resonated beyond sport. It’s sparked conversations about access, inclusion, and what mobility truly means in people’s lives.”
For the six riders, the road to the Cape Epic is as much mental as it is physical. Long training rides, strength work, and recovery sessions are all undertaken with a deeper purpose in mind.
“Training for the Cape Epic is intense, but every ride reminds me why this matters,” says Rentia Retief, artist and amputee athlete. “With the right prosthetic and support, I’ve been able to reclaim the life I knew before losing my leg. Through this campaign, we’re trying to help make that same freedom possible for others.”
Mhlengi Gwala, international para-triathlete and African champion, adds, “This race is about more than endurance. It’s about representation and showing what’s possible when people are given the tools and support to move forward.”
Representing the third team, Brian Style, a passionate cyclist who rebuilt his life through mountain biking, says, “Preparing for the Cape Epic is both challenging and incredibly rewarding. Being part of this campaign gives real meaning to the training, knowing that every kilometre ridden helps create opportunities for others to regain their independence and confidence.”
Funds raised through the campaign will support:
Jumping Kids, which provides prosthetic limbs, education access, and sport opportunities to children with limb loss.
Rejuvenate SA, which supplies mobility aids to adults who cannot afford them, restoring dignity and independence.
Zimele, which supports adults with physical disabilities to regain independence, reintegrate into society, and build economic self-sufficiency.
Together, these organisations are changing lives every day, from helping a child take their first steps to enabling adults to return to work and participate fully in their communities.
“The riders may be the face of the campaign, but the real heroes are the organisations working on the ground,” says Knoetze. “Our role is to amplify their impact and encourage South Africans to get involved in any way they can.”
As race day draws closer, Össur South Africa is calling on individuals, corporates, and communities to support the campaign through donations, fundraising initiatives, partnerships, or simply by sharing the message.
“‘What’s Your Epic?’ asks a simple but powerful question,” says Knoetze. “How can each of us help remove barriers and create access? When we support mobility, we support inclusion, opportunity, and futures.”
Donate, fundraise, or get involved as an individual or company. Your support can help someone stand, walk, work, play, or believe in possibility again.
Donations: Össur Donations, ABSA Bank, Account number: 4123 215 542, Branch code: 632005, Reference: Company name and contact number. For more information or Section 18A certificates, please contact Amelda Potgieter at apotgieter@ossur.com.
This is more than a race. It’s a movement. What’s your Epic?
Rare diseases each affect relatively small numbers of people, but collectively they impact more than 300 million individuals worldwide across over 7000 known conditions, with 70% of these starting in childhood.1 For many patients and families, the reality is often long diagnostic journeys, uncertainty and ongoing challenges in accessing treatment and support.
This year’s global Rare Disease Day theme: “More Than You Can Imagine,” highlights the often unseen challenges faced by rare disease communities and the need for more equitable healthcare systems for people living with rare conditions worldwide.
Ahead of Rare Disease Day 2026, observed globally on 28 February, Sanofi South Africa is reaffirming its commitment to improving outcomes for people living with rare diseases through ongoing research, collaboration to improve access to treatment, and engagement in policy and advocacy discussions that support patients and caregivers.
According to Monique Nel, Medical Adviser for Rare Diseases at Sanofi South Africa, rare diseases demand a long-term mindset. “Patient populations may be small, but that makes every data point even more valuable. Building evidence takes time, yet each insight brings us closer to understanding these conditions and the unique needs of patients – enabling us to deliver better care.”
Research remains essential in rare diseases, where evidence is often limited and every patient experience matters. Global disease registries, such as the Global Gaucher Registry, allow clinicians and researchers to collect real-world data that deepens understanding of how conditions present across different regions and healthcare settings. Participation from South African patients helps ensure local experiences are reflected in global research.
“For me, equity starts with representation,” says Nel. “Patients are not the same everywhere. Genetics, environment, and healthcare systems all shape how a disease presents and progresses. If our research doesn’t reflect the diversity of the populations we serve, we risk missing a critical part of the picture.”
From scientific progress to real-world access
Innovation can transform outcomes for people living with rare diseases, but scientific progress only matters if patients can actually reach and stay on treatment.
Rare disease therapies are often complex and highly specialised, which means access depends on collaboration across clinicians, funders, policymakers and industry. The focus is increasingly on sustainable solutions that support affordability, continuity of care and long-term patient support.
“Access isn’t only about availability,” says Nel. “It’s also about what happens after treatment starts – whether patients can continue therapy, feel supported, and navigate their care with confidence.”
Strengthening policy and advocacy
Policy and legislative frameworks play an important role in shaping diagnosis, treatment pathways and long-term patient support. Ongoing engagement between stakeholders is essential to strengthen South Africa’s rare disease landscape and ensure decisions reflect real patient needs.
Patient voices are becoming increasingly important in policy and reimbursement discussions, offering insights that clinical data alone cannot provide.
“Patients and caregivers become experts through their own lived experiences,” says Nel. “Listening to their voices is what enables us to design better systems and ultimately deliver better care.”
“When we say rare diseases impact lives more than you can imagine, we’re talking about the invisible barriers patients face before they ever receive care,” says Nel. “Healthcare systems matter because they determine how quickly families find answers, how care is funded, and whether patients are truly included.”
She notes that South Africa’s constitutional commitment to healthcare, together with opportunities created through National Health Insurance, presents an important moment to strengthen support for rare disease communities.
South Africa’s support for the May 2025 rare diseases resolution at the World Health Assembly followed advocacy by Rare Diseases South Africa, which engaged the Department of Health and Health Minister Aaron Motsoaledi, calling for rare diseases to be recognised as a national health priority.
“Progress comes from sustained advocacy, partnership and action. Strong policy needs partners who understand that acting for patients means helping build systems that work for them,” says Nel.
Working with patient communities
As part of Rare Disease Day 2026, Sanofi South Africa is once again partnering with Rare Diseases South Africa (RDSA) to raise awareness around rare disease equity and amplify the lived experiences of patients and families. The collaboration focuses on education, awareness and encouraging meaningful dialogue around patient needs.
“Healthcare is a constitutional right in South Africa,” says Kelly du Plessis, CEO & Founder of Rare Diseases South Africa. “The opportunity now is to ensure rare disease patients are fully included in that promise. Equity means policies that don’t simply acknowledge rare diseases but actively prioritise them.”
RDSA remains an independent patient advocacy organisation, while the partnership supports awareness initiatives and responsible collaboration that strengthens patient-centred advocacy.
“We remain committed to working for patients, but we’ve learned to do that more effectively by collaborating with patient societies,” says Nel. “That partnership approach is essential. Equity means ensuring every patient is heard, every voice contributes, and every partnership has the opportunity to drive better care.”
The partnership with RDSA aims to:
Increase understanding of rare diseases and their impact
Support patient-centred advocacy and awareness
Encourage informed dialogue across healthcare stakeholders
Highlight the importance of equity in research, access and policy
Both organisations agree that meaningful progress in rare diseases depends on collective action across patients, healthcare professionals, policymakers and industry partners.
Reference: 1. World Health Organization (WHO). Rare diseases: a global health priority for equity and inclusion. Seventy-eighth World Health Assembly, Draft Resolution A78/51, Fifth report of Committee A, 24 May 2025. Available from: https://apps.who.int/gb/ebwha/pdf_files/WHA78/A78_51-en.pdf
