Albinism Umbrella

Albinism Umbrella Annual Report 2020

Greetings from the Board of Directors of Albinism Umbrella (AU). I take this opportunity to
thank the members of the AU, development partners and the secretariat whose collective
effort has enabled us to steer a vibrant programme during the year albeit the COVID-19
challenges.

During the year, we focused on strengthening governance structures and policies, improving
the effectiveness of the secretariat, resource mobilization, strategic partnerships and
advocacy. I am happy to report that we are making progressive strides towards delivering
an effective and responsive programme to our members. As the year comes to an end, I am
pleased to note that AU has a functional board with a charter to guide its operations.

The key governance structures; the general assembly, the board and management/secretariat
are in place and fully functional. The key policy documents are now in place including; the
constitution, human resource, finance and, Monitoring and Evaluation manuals. We have a
strategic plan which informs our annual and quarterly implementation plans…..Read more

Spatial Mapping

This was a cross-sectional study carried out in Eastern Uganda focusing on persons with albinism. Spatial mapping was done using Tablets with GPS (Global Positioning System) capabilities. Household and organizational characteristics were captured using a digital structured questionnaire, using ODK (Open Data Kit)-Collect application.

Perceptions of persons with albinism were gathered using in-depth interviews and analyzed based on the ecological model.

The main aim of this research was to create a database through the mapping of all persons with albinism and organizations serving them in the selected districts. We also determined perceptions of persons with albinism towards the communities they live in and the community perception towards them.

Results revealed that Sironko (20.2%), Bududa (17.9%), and Manafwa (17.5%) had the highest number of persons with albinism. Most respondents (56%) in households with Persons with Albinism had primary level education. The main reason for dropping out of school was the lack of school fees. More than two thirds (67.7%) of the respondents did not know the cause of Albinism.

Access to and cost of sunscreen remain a major challenge. 86.3%) of Persons with Albinism do not have access to sunscreen. In addition, (75.7%) of Persons with Albinism had an eyesight problem. Moreover, (76.8%) of Persons with Albinism had never gone for an eye checkup. Poverty levels were highest among households that had more Persons with Albinism. Read more….