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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

Conference: Expanded ARV treatment
2005-03-02

VENUE: University of the Free State, Bloemfontein, South Africa
DATE: 30 March 2005 - 1 April 2005

  • ARV Programme as on 24Feb Download Word document
     
  • Programme Special events Download Word document


    Official web site www.fshealth.gov.za/subsites/arvc

     


    Rationale for the Conference
    At the time of the planned Conference, much ground would have been covered, both in the Free State and in South Africa, in respect of the expanded public sector ARV treatment programme in respect of research, experiences in practice, training of staff, treatment of patients, lessons learned, successes and failures, etc. The time would then be quite opportune to share these in a systematic manner with other provinces and countries, as well as with the large variety of stakeholders and role players in the ARV and related domains, be they academics and researchers, policy makers and service/facility managers, the variety of caregivers, and the community organisations and affected patients.

The Conference and current research
The proposed Conference is, firstly, directly linked to the current research on the public sector roll-out of ARV treatment in the Free State conducted by several research institutions (e.g. CIET, CHSR&D, UCT Lung Institute). Secondly, the Conference could and would serve as a forum for other research groups in the country and further a field to report and share knowledge and experiences on ARV treatment and related initiatives. Lastly, the Conference will stage a golden opportunity for researchers and scientists, on the one hand, and policy makers, managers, and caregivers (as knowledge users), on the other hand, to engage in cross-disciplinary discourse on this mutual and topical theme.

Theme of Conference
Expanded ARV treatment in the Free State: sharing experiences

Focus
The focus is primarily on public sector ARV treatment in the Free State, but also initiatives/activities/perspectives of relevance to the Free State elsewhere in the country at large and further a field, as well as relevant ARV initiatives in the public, private, NGO and FBO sectors. Bear in mind, however, that ARV treatment is but part of a much more comprehensive approach to HIV and AIDS. The Conference will, therefore, not narrowly focus on the ARV treatment programme only. The broader context, other relevant dimensions, and a comprehensive approach to the challenges of HIV, AIDS and TB are of equal importance.

The purpose of the Conference
Enhance meaningful exchange, mutual understanding and collaboration among researchers, scientists, policy makers, managers and practitioners in the field of ARV treatment and related fields.

Share experiences in the various spheres of ARV treatment and related spheres (policy, management, practice, research, training, public-private-civil society sectors).

Record, reflect and report on the establishment of the ARV treatment programme in the Free State, and in within the context of the comprehensive HIV/AIDS programme.

Disseminate important research results on ARV treatment and related themes to health policy makers, managers, practitioners, communities and to the research community.

Stimulate discourse among various disciplines and various stakeholders/role players involved in ARV treatment and related programmes.

Sensitise and acquaint researchers to the requirements of policy makers, managers and practitioners in respect of ARV treatment and related fields.

Facilitate the implementation of research results in ARV treatment policy, programmes and practice.

Dissemination of Conference-related information
Information generated during the Conference could feed into policy, management and practice of ARV treatment, the training accompanying such programme, and the existing body of knowledge. After the Conference the information will be disseminated via the Internet and by scientific and popular publications.

Date and duration
Set for 30 & 31 March & 1 April 2005; to commence at 09:00 on the first day (30 March) and to end at 16:30 (1 April) the third day.

Format and scope of Conference
Alternating plenary, parallel sessions and debates focused on topical issues and interest groups. The Conference will strive to be maximally interactive and participative.

Themes and topics to cover:

  • Policy, management and health services/practice (various levels and contexts – clinical treatment, information, IT systems, pharmacy, laboratories, nutrition)
     
  • Research covering all relevant disciplines and diverse dimensions of ARV treatment and related themes
  • Training and evaluation of training
  • Patients, communities and civil society organisations
  • Public, private, NGO, FBO initiatives and partnerships

Emphasis will be on the Free State, however, with of significant involvement from other provinces, SADC countries, and countries further a field. The thrust will be to export lessons and experiences from the Free State, but also to import lessons and experiences from other provinces, countries and sectors.

Presenters
Key presenters from the Free State, other provinces, South Africa, from the private, FBO and NGO sectors, and from several other countries

Delegates
About half of the delegates will be Free State stakeholders and role players (all levels and all contexts). The other half will be role players and stakeholders in the ARV and related fields from other provinces, the national level, and other countries, as well as from the private, public and non-governmental sectors.

Focused workshops
Provision will be made for half-a-day or one-day workshop initiatives on the third day (1 April 2005).

Enquiries
For more information please contact:

Prof Dingie van Rensburg
Centre for Health Systems Research & Development
University of the Free State
PO Box 339
Bloenfontein
SOUTH AFRICA
9300

Contact:
Carin van Vuuren
Conference Organiser
Centre for Health Systems Research & Development
University of the Free State
P.O.Box 339
Bloemfontein
South Africa
9300
Tel +27 (0) 51 401 2181
Fax +27 (0) 51 4480370
Cell 0832932890
e-mail: arvconference.hum@mail.uovs.ac.za

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