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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

Hearing loss a silent public health crisis in South Africa
2017-03-27

Description: Hearing loss a silent public health crisis in South Africa Tags: Hearing, Deaf, World Hearing Day
Dr Magteld Smith engages on the topic of hearing loss
and how it coincides with the commemoration of
World Hearing awareness during the month of March.
Photo: Oteng Mpete 

Communication is a principal challenge for people with hearing loss. It can be difficult to negotiate everyday interactions, whether in the workplace, on the street, in classrooms, courts, during consultations with health professionals, or even when contacting the police. The World Health Organisation’s (WHO) World Hearing Day is an annual advocacy event held each year on 3 March to raise awareness and promote ear and hearing care across the world. In many countries this awareness campaign usually starts on 3 March but many continue to create awareness for the full month of March. 

Hearing loss is a global reality
According to Dr Magteld Smith, a researcher at the University of the Free State (UFS) School of Medicine’s Department of Otorhinolaryngology, unaddressed hearing loss poses a high cost for the economy globally and has a significant impact on the lives of those affected. Interventions to address hearing loss are available in South Africa but are not accessible or affordable for most citizens. This is partly because not only persons with hearing loss but also people with disabilities experience barriers in accessing services that many of us take for granted, including health, education, employment, and transport as well as information. These difficulties are exacerbated in less-advantaged communities.

“WHO estimates that there are more than 360 million persons with hearing loss globally. The statistics in South Africa are unreliable due to the different definitions used by Statistics South Africa and the absence of training of the officials who conduct and collect statistics concerning hearing loss in South Africa,” says Dr Smith. 

According to Dr Smith, analysis from retrospective studies reflects that about 17 out of 1 000 infants are born daily in South Africa with severe to profound hearing loss. However, Dr Smith states that the number could be higher because of late diagnosis, high levels of undiagnosed and untreated hearing loss. This excludes young adults, adults and the elderly as well as children with acquired (become deaf after birth) hearing loss.

Crisis that needs urgent intervention 
Dr Smith says hearing loss is an emergency which the South African government fails to prioritise. She says that research published confirms that the risk compounding the projected increase in hearing loss that comes with an ageing population. This is a looming and silent public-health crisis.
She believes that the government should take urgent action to align research-spending with the current and projected size and impact of hearing loss. It should also collaborate across related conditions, such as vision, neurodegenerative diseases and neurological conditions. Furthermore, the government needs, and is obligated, to deliver more accessible and integrated services and develop quality standards that take account of the whole pathway – linking public health, clinical and social needs.

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