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About Us

 

Vision

 

To enhance the Self esteem of People with Albinism

 

Mission

  • To educate and provide user- friendly information on albinism to the community.
  • Dispelling myths and Misconceptions while alleviating trauma around albinism.

Introduction

 

The Albinism Society of South Africa was established in 1992 and is the brainchild of the Executive Director, Mrs. Nomasonto Mazibuko.  The whole idea of establishing the organization was to enhance the self- esteem of people with albinism, enable and support parents to care properly for children with albinism and create socially acceptable conditions for people with albinism.   This is achieved by running a number of projects and programmes as well as running workshops and seminars.  The other aim of the society is collecting and disseminating information on albinism to the community.

 

Background: Operations and Governance

 

The Albinism Society functions with the help and support of the National Office located in Gauteng in the center of Johannesburg as well as support groups and non-permanent co-ordinators in nine provinces who service the organization purely on a voluntary basis.

 

There is a board of seven members governing the operations of the organization.  The board meets once every quarter and in addition the executive committee made up of the Chairperson, the Treasurer, the Minutes Secretary and Projects Co-ordinator meets regularly for urgent matters.

 

Programme Implementation

 

The Society engages in lobbying and advocating for needs, recognition and social acceptability of people with albinism and their families.  It also provides education and awareness by engaging the community through conducting workshops that seek to dispel myths and misconceptions on albinism.  Some of the activities of the Society include:
  • In conjunction with the Department of Education facilitate conducive learning conditions for learners with albinism at schools.
  • In conjunction with the Department of Social Development , facilitate the dissemination of information about social issues
  • Make available relevant and factual information on albinism to various print media organisations as well as broadcasters in TV and Radio via interviews, pamphlets and brochures.
  • Offer and facilitate counselling to individuals and parents of people with albinism.
  • Run awareness campaigns on various issues on albinism, a number of activities take place during the month of June every year which denotes

     

    Albinism Month. Click here to view declaration

Aims and Objectives 

  • To enhance the self-esteem of people with albinism.
  • To offer information on albinism to its members and the community through programmes that will amplify the fact that “Albinism is a manageable condition.”
  • To encourage its members to cope with the condition through use of optical aids, sun-screens, and the correct type of clothing.
  • To provide educational programmes that will assist members to acquire skills towards adequate health conditions as well as social and economic stability.
  • To alleviate the trauma experienced by people with albinism their families and associates by assisting them to accept the situation and providing support by educating them and the community through workshops, seminars and conferences.
  • To establish local, provincial and national structures in the Republic of South Africa.

Notable Activities of the Society

 

The Society is involved in the following activities:
  • Awareness Campaigns on Albinism
  • Fieldwork involving schools and churches disseminating information on albinism.
  • Establishment of support groups in the nine provinces of South Africa.
  • Systematic training for effective parenting
  • Training in Human Rights issues and gender issues
  • Counselling of people with albinism, their families and associates
  • Life-skills training for the youth
  • HIV/AIDS awareness and management
  • Fundraising and resource mobilisation
  • Career advice for young people
  • Forging links with other organisations sharing the same plight.

Board Members

 

NAME &SURNAME
POSITION
Mr. Patrick   Wadula
Chairperson
Mr. Sanele Mtshazo
Vice Chairperson
Morris Lestoalo
Treasurer
Tendamudzimu Mathagu
Board Member
Thabo Letsati
Board Member
Jeffrey Rasevhechele
Board Member
Eva  Sebotsane
Board Member

Affiliations

 

The Society is an affiliate to the South African National Council for the Blind (SANCB) as well as the South African inherited Disorders Association (SAIDA). Cancer association