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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 cardiac team leading with project
2017-05-31

 Description: Cardiac team read more Tags: Cardiac team read more

Prof Peter Schultheiss of the Charité University in Berlin,
Germany, visited the Robert WM Frater Centre for
Cardiovascular Research at the UFS for a study regarding
cardiomyopathy, a significant cause of fatal heart failure
among Africans. From the left are Dr Glen Taylor,
Dr Danie Buys, Prof Makoali Makatoko,
Prof Schultheiss and Prof Francis Smit.
Photo: Rulanzen Martin

A team of cardiac doctors associated with the Robert WM Frater Cardiovascular Research Centre at the University of the Free State’s (UFS) Faculty of Health Sciences has commenced with a pioneering research project regarding idiopathic dilating cardiomyopathy.  

An Afrocentric research focus
Prof Francis Smit, Head of the Department of Cardiothoracic Surgery at the UFS and Head of the Frater Centre, describes dilating cardiomyopathy as a heart muscle disease that is quite common, particularly among people of African descent. The disease weakens the heart muscle, which in turn leads to heart failure.

“To date there is no curable treatment for this condition and 50% of patients that have shown heart failure, died within a period of five years. The causes of this condition have been unknown in the majority of patients. But over the past few years major strides have been made where virus infections of the heart muscle or myocarditis have been identified as a possible underlying cause. Various genetic diseases are also linked to it,” says Prof Smit.

International collaborations ensure success
According to Prof Smit, the project is being run in conjunction with Prof Heinz-Peter Schultheiss of the Charité University and the Institute for Cardiac Diagnostics and Therapy in Berlin, Germany.

“We have been working on the project over the past 18 months and I have twice visited Prof Schultheiss in Germany. He is now visiting us in Bloemfontein. We have established a collaborative project focused on patients in central South Africa”.
Prof Schultheiss is a world leader regarding the diagnosis, pathology and treatment of dilating cardiomyopathy, says Prof Smit.

“He brings a lifetime of research experience to Bloemfontein and is internationally renowned as the father of myocardial or heart muscle biopsies.

“His pioneering work on the discipline has led to diagnostic accuracy that has induced purposeful and personalised treatment of dilating cardiomyopathy and has brought about dramatic changes in some subsets of patients’ life expectancy and their cure.”

Solving problems close to home
According to Prof Mokoali Makatoko, Head of the Department of Cardiology, there are more than 1500 new cases of heart failure identified annually at the Universitas Academic Hospital, of which approximately 30% are attributed to cardiomyopathy. “With the use of endomyocardial biopsies the team hopes to treat viruses unique to Southern Africa as well as other underlying causes of dilating cardiomyopathy.”

Prof Stephen Brown, Head of Paediatric Cardiology at the Universitas Academic Hospital, says children suffering from this disease never reach a mature age and those under his supervision will also be undergoing these tests. Various other departments at the UFS will also participate in this project. Profs Makatoko and Brown did the first four endomyocardial biopsies under the management of Prof Schultheiss during the past week. The results will be available in the coming weeks after which the project will be officially launched and patient recruitment will start in earnest.

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