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  • Organisation

    Founded in 2014, Albinism Umbrella has the ultimate aim of having a joint voice for all persons with albinism in Uganda. The vision of the organisation is driven by a desire to have lasting impact on persons with albinism.  The group was incorporated in February 2017 as a company limited by guarantee by its founding members Ms. Olive Namutebi and Ms.Phenamyra Nagujja as women with albinism themselves passionate about the inclusion of people with albinism.

    Albinism Umbrella has grown from strength to strength in recent years. As a young organisation,  they have moved from a small vision of providing hope to people with albinism to having a regional outlook. When the organisation started it sought to be relevant to the Ugandan community focusing on legislature changes. Now it has a more global perspective on issues of albinism and strives to be the number one authority on issues of albinism and the related challenges in Africa.

    • Organisation

      Founded in 2014, Albinism Umbrella has the ultimate aim of having a joint voice for all persons with albinism in Uganda. The vision of the organisation is driven by a desire to have lasting impact on persons with albinism.  The group was incorporated in February 2017 as a company limited by guarantee by its founding members Ms. Olive Namutebi and Ms.Phenamyra Nagujja as women with albinism themselves passionate about the inclusion of people with albinism.

      Albinism Umbrella has grown from strength to strength in recent years. As a young organisation,  they have moved from a small vision of providing hope to people with albinism to having a regional outlook. When the organisation started it sought to be relevant to the Ugandan community focusing on legislature changes. Now it has a more global perspective on issues of albinism and strives to be the number one authority on issues of albinism and the related challenges in Africa.

    • Project

      Profiling People with Albinism is a spatial mapping project, using GPS mapping to profile people with albinism and their households to create a database and open data kits to collect data on health, educational background, and social economic status. The purpose of this is to better support service delivery, to empower and strengthen their influencing capacity as a marginalised and vulnerable community.

      Ultimately, the mapping supports the following interventions:

      • To encourage community leaders to support family and community protection for PWAs.
      • To support the local council in ensuring parents provide adequate care and support to PWAs.
      • To ensure that the police provides protection for PWAs and enforces the law against those who abuse the rights of PWAs.
      • To ensure that health workers provide physiological support to first time mothers and continued support to parents of PWAs.
      • To ensure that district council includes issues of protection and support to PWAs in their strategic plans.
      • To guarantee that civil rights groups use this information to advocate for the rights of PWAs.
      • To work with school administrators to enact rules and regulations against name calling and bullying of PWAs.

      For more information on the launch of the study please watch this Youtube video.

  • Project

    Profiling People with Albinism is a spatial mapping project, using GPS mapping to profile people with albinism and their households to create a database and open data kits to collect data on health, educational background, and social economic status. The purpose of this is to better support service delivery, to empower and strengthen their influencing capacity as a marginalised and vulnerable community.

    Ultimately, the mapping supports the following interventions:

    • To encourage community leaders to support family and community protection for PWAs.
    • To support the local council in ensuring parents provide adequate care and support to PWAs.
    • To ensure that the police provides protection for PWAs and enforces the law against those who abuse the rights of PWAs.
    • To ensure that health workers provide physiological support to first time mothers and continued support to parents of PWAs.
    • To ensure that district council includes issues of protection and support to PWAs in their strategic plans.
    • To guarantee that civil rights groups use this information to advocate for the rights of PWAs.
    • To work with school administrators to enact rules and regulations against name calling and bullying of PWAs.

    For more information on the launch of the study please watch this Youtube video.

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