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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

Heart diseases a time bomb in Africa, says UFS expert
2010-05-17

 Prof. Francis Smit

There are a lot of cardiac problems in Africa. Sub-Saharan Africa is home to the largest population of rheumatic heart disease patients in the world and therefore hosts the largest rheumatic heart valve population in the world. They are more than one million, compared to 33 000 in the whole of the industrialised world, says Prof. Francis Smit, Head of the Department of Cardiothoracic Surgery at the Faculty of Health Sciences at the University of the Free State (UFS).

He delivered an inaugural lecture on the topic Cardiothoracic Surgery: Complex simplicity, or simple complexity?

“We are also sitting on a time bomb of ischemic heart disease with the WHO (World Health Organisation) estimating that CAD (coronary artery disease) will become the number-one killer in our region by 2020. HIV/Aids is expected to go down to number 7.”

Very little is done about it. There is neither a clear nor coordinated programme to address this expected epidemic and CAD is regarded as an expensive disease, confined to Caucasians in the industrialised world. “We are ignoring alarming statistics about incidences of adult obesity, diabetes and endemic hypertension in our black population and a rising incidence of coronary artery interventions and incidents in our indigenous population,” Prof. Smit says.

Outside South Africa – with 44 units – very few units (about seven) perform low volumes of basic cardiac surgery. The South African units at all academic institutions are under severe threat and about 70% of cardiac procedures are performed in the private sector.

He says the main challenge in Africa has become sustainability, which needs to be addressed through education. Cardiothoracic surgery must become part of everyday surgery in Africa through alternative education programmes. That will make this specialty relevant at all levels of healthcare and it must be involved in resource allocation to medicine in general and cardiothoracic surgery specifically.

The African surgeon should make the maximum impact at the lowest possible cost to as many people in a society as possible. “Our training in fields like intensive care and insight into pulmonology, gastroenterology and cardiology give us the possibility of expanding our roles in African medicine. We must also remember that we are trained physicians as well.

“Should people die or suffer tremendously while we can train a group of surgical specialists or retraining general surgeons to expand our impact on cardiothoracic disease in Africa using available technology maybe more creatively? We have made great progress in establishing an African School for Cardiothoracic Surgery.”

Prof. Smit also highlighted the role of the annual Hannes Meyer National Registrar Symposium that culminated in having an eight-strong international panel sponsored by the ICC of EACTS to present a scientific course as well as advanced surgical techniques in conjunction with the Hannes Meyer Symposium in 2010.

Prof. Smit says South Africa is fast becoming the driving force in cardiothoracic surgery in Africa. South Africa is the only country that has the knowledge, technology and skills base to act as the springboard for the development of cardiothoracic surgery in Africa.

South Africa, however, is experiencing its own problems. Mortality has doubled in the years from 1997 to 2005 and half the population in the Free State dies between 40 to 44 years of age.

“If we do not need health professionals to determine the quality and quantity of service delivery to the population and do not want to involve them in this process, we can get rid of them, but then the political leaders making that decision must accept responsibility for the clinical outcomes and life expectancies of their fellow citizens.

“We surely cannot expect to impose the same medical legal principles on professionals working in unsafe hospitals and who have complained and made authorities aware of these conditions than upon those working in functional institutions. Either fixes the institutions or indemnifies medical personnel working in these conditions and defends the decision publicly.

“Why do I have to choose the three out of four patients that cannot have a lifesaving operation and will have to die on their own while the system pretends to deliver treatment to all?”

Prof. Smit says developing a service package with guidelines in the public domain will go a long way towards addressing this issue. It is also about time that we have to admit that things are simply not the same. Standards are deteriorating and training outcomes are or will be affected.

The people who make decisions that affect healthcare service delivery and outcomes, the quality of training platforms and research, in a word, the future of South African medicine, firstly need rules and boundaries. He also suggested that maybe the government should develop health policy in the public domain and then outsource healthcare delivery to people who can actually deliver including thousands of experts employed but ignored by the State at present.

“It is time that we all have to accept our responsibilities at all levels… and act decisively on matters that will determine the quality and quantity of medical care for this and future generations in South Africa and Africa. Time is running out,” Prof. Smit says.
 

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