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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 researcher selected as emerging voice
2016-11-03

Description: Andre Janse van Rensburg  Tags: Andre Janse van Rensburg

André Janse van Rensburg, researcher at the
Centre for Health Systems Research and Development
at the University of the Free State, will be spending
almost three weeks in Vancouver, Canada. He will be
attending the Emerging Voices for Global Health programme
and Global Symposium on Health Systems Research.
Photo: Jóhann Thormählen

His research on the implementation of the Integrated School Health Programme (ISHP) in rural South Africa led to André Janse van Rensburg being selected to become part of the Emerging Voices for Global Health (EV4GH) group.

It is a collection of young, promising health policy and systems researchers, decision-makers and other health system professionals. A total of 222 applications from 50 countries were received for this programme, from 3-19 November 2016 in Vancouver, Canada.

The EV4GH is linked to the fourth Global Symposium on Health Systems Research (HSR2016), from 14-18 November 2016. It also taking place in Vancouver and Janse van Rensburg will be taking part, thanks to his research on the ISHP in the Maluti-a-Phofung area. He is a researcher at the Centre for Health Systems Research & Development (CHSR&D) at the University of the Free State (UFS).

The theme of the HSR2016 is Resilient and Responsive Health Systems for a Changing World. It is organised every two years by Health Systems Global to bring together roleplayers involved in health systems and policy research and practice.

Janse van Rensburg also part of Health Systems Global network
The EV4GH goals relate to the strengthening of global health systems and policies, particularly from the Global South (low-to-middle income countries with chronic health system challenges). The initiative involves workshops, presentations, and interactive discussions related to global health problems and solutions.

As an EV4GH alumni, Janse van Rensburg will become part of the Health Systems Global network. Partnering institutions include public health institutes from China, India, South Africa, Belgium, and the UK.

“The EV4GH is for young, promising health
policy and systems researchers, decision-makers
and other health system professionals.”

Research aims to explore implementation of schools health programme
In 2012, the ISHP was introduced in South Africa. This policy forms part of the government's Primary Health Care Re-engineering Programme and is designed to offer a comprehensive and integrated package of health services to all pupils across all educational phases.

Janse van Rensburg, along with Dr Asta Rau, Director of the CHSR&D, aimed to explore and describe implementation of the ISHP. The goals were to assess the capacity and resources available for implementation, identify barriers that hamper implementation, detect enabling factors and successful aspects of implementation and disseminate best practices in, and barriers to, ISPH implementation with recommendations to policymakers, managers and practitioners.

“A lot of people were saying they don’t
have enough resources to adequately
implement the policy as it is supposed to
be implemented.”

Findings of project in Maluti-a-Phofung area
Janse van Rensburg said the ISHP had various strengths. “People were impressed with the integrated nature of the policy and the way people collaborated across disciplines and departments. The school team were found to work very well with the schools and gel well with the educators and principles.”

He said the main weakness of the implementation was resources. “A lot of people were saying they don’t have enough resources to adequately implement the policy as it is supposed to be implemented.

“Another drawback is the referral, because once you identify a problem with a child, the child needs to be referred to a hospital or clinic.” He means once a child gets referred, there is no way of knowing whether the child has been helped and in many cases there is no specialist at the hospital.

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