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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

Research by experts published in Nature
2011-06-02

 
The members of the research group are, from the left, front: Christelle van Rooyen, Mariana Erasmus, Prof. Esta van Heerden; back: Armand Bester and Prof. Derek Litthauer.
Photo: Gerhard Louw

A  research article on the work by a team of experts at our university, under the leadership of Prof. Esta van Heerden, and counterparts in Belgium and the USA has been published in the distinguished academic journal Nature today (Thursday, 2 June 2011).

The article – Nematoda from the terrestrial deep subsurface of South Africa – sheds more light on life in the form of a small worm living under extreme conditions in deep hot mines. It was discovered 1,3 km under the surface of the earth in the Beatrix Goldmine close to Welkom and is the first multi-cellular organism that was found so far beneath the surface of the earth. The worm (nematode) was found in between a rock face that is between 3 000 and 12 000 years old.

The research can shed some new light on the possibility of life on other planets, previously considered impossible under extreme conditions. It also expands the possibilities into new areas where new organisms may be found.

These small invertebrates live in terrestrial soil subjected to stress almost for 24 hours They live through sunshine, rain, scorching temperatures and freezing conditions. Through time they developed a means to cope with harsh conditions. Terrestrial nematodes (roundworms, not to be confused or related to earthworms) are among those very tough small invertebrates that deal with those conditions everywhere. After insects they are the most dominant multi-cellular (metazoan) species on the planet having a general size of 0,5 to 1 mm and are among the oldest metazoans on the planet, Nature says in a statement on the article.

They inhabit nearly every imaginable habitat form the deep seas to the acid in pitcher . Some nematodes simply eat bacteria and these are the ones we study here. Terrestrial nematodes have developed a survival stage that can take them through hard times (absence of food, extreme temperatures, too little oxygen, crowding, and more).

At the head of the research was Prof. Gaetan Borgonie of the Ghent University in Belgium and a world leader in the discipline of nematode research. He was brought into contact with the South African research leader, Prof. Esta van Heerden, who set up a cooperation agreement with the University of Ghent and Prof. Borgonie. Prof. Van Heerden manages the Extreme Biochemistry group at the UFS and the research was funded by several research grants.

The search for worms began in earnest in 2007, but it was soon clear that the sampling strategy was insufficient. A massive sampling campaign in 2008-2009 in several mines led to the discovery of several nematodes and the new nematode species Halicephalobus mephisto. It is named after the legend of Faust where the devil, also known as the lord of the underworld is called Mephistopheles.

Nature says special filters had to be designed and installed on various boreholes. Unfortunately, there is no easy way of finding a magic formula and designs had to be adapted by trial and error; improving existing designs all the time. The work of the UFS Mechanical Workshop, which manufactured, adapted and helped design it, was crucial in this respect. Filters were left on the holes for varying periods, sometimes for a few hours and sometimes for months. Prof. Derek Litthauer from the UFS played a big role in sampling, filter designs and coming up with ideas for names for the new nematode with Prof. Borgonie.

Research showed that the nematodes can live in the deep for up to 12 000 years. Three students – Armand Bester, Mariana Erasmus and Christelle van Rooyen from the UFS – did the work on this.

The importance of multi-cellular animals living in the ultra-deep subsurface is twofold: The nematodes graze on the existing bacterial population and influence their turnover. Secondly, if more complex multi-cellular organisms can survive in the deep subsurface on earth, this may be good news when looking for life on other planets where the surface is considered too inhospitable (e.g. Mars). Complex life forms can be found in ecosystems previously thought to be uninhabitable. Nature says this expands the possibilities into new areas where new organisms may be discovered.

Future research will focus on selective boreholes to look for more metazoans, so that a better idea of the complexity of the ecosystems there can be obtained. It will also look for metazoans in the deep subsurface on other continents to determine similarities and differences.

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