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04 November 2025 | Story Tshepo Tsotetsi | Photo Stephen Collett
Albinism Conference
The University of the Free State (UFS) brought together global voices, ideas, and lived experiences at the Albinism Beyond 2030: Legal and Healthcare Pathways to Inclusion International Conference, hosted from 23 to 24 October 2025 at the Bloemfontein Campus.

The University of the Free State (UFS) recently hosted a global conference on legal and healthcare pathways to inclusion for people with albinism.

The Albinism Beyond 2030: Legal and Healthcare Pathways to Inclusion International Conference, hosted from 23 to 24 October 2025 at the UFS Bloemfontein Campus, brought together global voices, ideas, and lived experiences related to albinism. 

Jointly organised by the Faculty of Law’s Disability Rights Unit and the Faculty of Health Sciences’ Department of Dermatology, the two-day conference convened scholars, medical experts, policymakers, human rights advocates, and persons with albinism from across Africa and beyond. Together, they explored how law and healthcare can intersect to advance equality, dignity, and social inclusion.

“The conference invites us to move from awareness to accountability, transforming commitments into sustained, measurable change that ensures persons with albinism live, work, and thrive with equality, safety, and dignity in every sphere of life,” said Laetitia Fourie, Project Coordinator of the UFS Disability Rights Unit. 

 

From conversation to collaboration

In his address, Prof Serges Kamga, Dean of the Faculty of Law, spoke of the university’s responsibility to confront discrimination with compassion and justice. “Persons with albinism are victims of a clear attempt to wipe them out of the face of the earth,” he said. “Hosting this conference reflects who we are – a university rooted in care, inclusion, and social justice.”

He added that the collaboration between the Faculties of Law and Health Sciences reflects one of the UFS’s strategic goals: breaking down barriers between disciplines. “This is not just a conference for lawyers or for doctors,” he said. “It’s a shared platform for dialogue, research, and future projects that connect us nationally, regionally, and globally.”

The sense of collaboration was echoed by Prof Frans Maruma, Head of the Department of Dermatology, who emphasised that the goal of the conference was not just discussion, but measurable change. “We can speak, but if those talks are not translating into actions, we might as well pack and go,” he said. “This is where we begin crafting ideas that flourish into tangible outcomes – policy, research, and healthcare reforms that ensure persons with albinism are fully documented, supported, and cared for.”

 

Turning inclusion into action

Representing the university’s leadership, Dr Molapo Qhobela, Deputy Vice-Chancellor: Strategic Initiatives, International and Institutional Affairs, reminded delegates that inclusion must live through action. “This gathering comes at a pivotal moment when our societies must move beyond awareness towards action, beyond empathy towards equity,” he said.

Dr Qhobela reflected on the UFS’s unique model of inclusion, which sees the Centre for Universal Access and Disability Support (CUADS), the Disability Rights Unit, and the Faculty of Health Sciences form a connected ecosystem of care; combining access, advocacy, and research. “The right to health cannot exist without the right to justice, and the right to justice cannot exist without care,” he said.

Special guests included Maluka-Anne Miti-Drummond, United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism; Antoine Gliksohn, Executive Director of the Global Albinism Alliance; Commissioner Bonface Massah, Executive Director of the Africa Albinism Network and Commissioner of the Malawi Human Rights Commission; Nomasonto Mazibuko, Founder and Executive Director of the Albinism Society of South Africa; Patrick Wadula, National Chairperson of the National Albinism Task Force; Prof Charlotte Baker, Professor of French and Critical Disability Studies at Lancaster University; Commissioner Elspeth Nomahlubi Berlinda Khwinana from the South African Human Rights Commission; Commissioner Kamohelo Teele from the Commission for Gender Equality; and Visual Art Activist Athenkosi Kwinana.

Their participation, alongside local and international academics, students, and community representatives, underscored the significance of this dialogue – not as a once-off event, but as a collaborative movement uniting research, healthcare, and human rights.

From law to health to art, Albinism Beyond 2030 showcased the power of partnership in shaping inclusive futures. A key feature of the conference was Kwinana’s art exhibition, titled Ndijongile, which offered a vivid and personal reflection on the experiences of persons with albinism. The conference was a shared commitment to ensure that no person with albinism is left unseen, unprotected, or unheard.

News Archive

UFS cardiologists and surgeons give children a beating heart
2015-04-23

Photo: René-Jean van der Berg

A team from the University of the Free State School for Medicine work daily unremittingly to save the lives of young children who have been born with heart defects by carrying out highly specialised interventions and operations on them. These operations, which are nowadays performed more and more frequently by cardiologists from the UFS School of Medicine, place the UFS on a similar footing to world-class cardiology and cardio-thoracic units.

One of the children is seven-month-old Montsheng Ketso who recently underwent a major heart operation to keep the left ventricle of her heart going artificially.

Montsheng was born with a rare, serious defect of the coronary artery, preventing the left ventricle from receiving enough blood to pump to the rest of the body.

This means that the heart muscle can suffer damage because these children essentially experience a heart attack at a very young age.

In a healthy heart, the left ventricle receives oxygenated blood from the left atrium. Then the left ventricle pumps this oxygen-rich blood to the aorta whence it flows to the rest of the body. The heart muscle normally receives blood supply from the oxygenated aorta blood, which in this case cannot happen.

Photo: René-Jean van der Berg

“She was very ill. I thought my baby was going to die,” says Mrs Bonizele Ketso, Montsheng’s mother.

She says that Montsheng became sick early in February, and she thought initially it was a tight chest or a cold. After a doctor examined and treated her baby, Montsheng still remained constantly ill, so the doctor referred her to Prof Stephen Brown, paediatric cardiologist at the UFS and attached to Universitas Hospital.

Here, Prof Brown immediately got his skilled team together as quickly as possible to diagnose the condition in order to operate on Montsheng.

During the operation, the blood flow was restored, but since Montsheng’s heart muscle was seriously damaged, the heart was unable to contract at the end of the operation. Then she was coupled to a heart-lung machine to allow the heart to rest and give the heart muscle chance to recover. The entire team of technologists and the dedicated anaesthetist, Dr Edwin Turton, kept a vigil day and night for several days.

Prof Francis Smit, chief specialist at the UFS Department of Cardiothoracic Surgery, explains that without this operation Montsheng would not have been able to celebrate her first birthday.

“After the surgery, these children can reach adulthood without further operations. Within two to three months after the operation, she will have a normal active life, although for about six months she will still use medication. Thereafter, she will be tiptop and shortly learn to crawl and walk.”

Mrs Ketso is looking forward enormously to seeing her daughter stand up and take her first steps. A dream which she thought would never come true.    

“Write there that I really love these doctors.”

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