OUR JOURNEY OF RESILIENCE, GROWTH & IMPACT
6 years of championing the rights of persons with albinism
Formerly, albinism was not recognized at all in Uganda until June 13th, 2014 when UN resolution (HR council) recognized the condition and designated the International Albinism Awareness Day to raise awareness.
Recognition of albinism as a form of disability in the 2020 Persons with Disabilities Act. This significant effort purposed to address discrimination against persons with albinism.
The approval of the National Action Plan for Persons with Albinism by the government of Uganda and its Launch in 2022, as a policy document for the promotion of persons with albinism.
We held the very first IAAD in Uganda after its initiation and declaration on December 18th, 2014, by the UN General assembly. Albinism Umbrella has continuously spearheaded the day’s celebrations since then.
Albinism Umbrella held its first ever Annual General Meeting and elected a fully constituted Board in 2020. Strengthened governance by developing organizational policies like the Constitution, Child Protection Policy, Safeguarding policy, Human resource policy, Finance and procurement policy, Code of Conduct, Board Charter among others.
Albinism Umbrella secured an accounting system which has improved Albinism Umbrella financial operations.
Successfully established Albinism Umbrella structures in Bundibugyo, Kampala, Luwero, Wakiso, Kamwenge, Kyegegwa, Kamuli, Lira, Hoima, Kyenjojo, Buikwe districts, among others.
In 2020, we solicited food relief, 725kgs of beans, 1000kgs of posho and distributed to over 15 families of persons with albinism from the Office of the Prime Minister. This was following the country lockdown by the government to prevent the spread of Corona Virus.
Parliamentary Fundraising walks (2017-2020) towards the establishment of a rehabilitation center for persons with albinism. Over 100 million was raised during this campaign.
Albinism Umbrella has been able to map, profile and gather credible data on persons with albinism in all the 4 regions of Uganda. So far, over 1600 persons with albinism have been digitally mapped across the country.
We have engaged Uganda Cancer Institute and made input to the National cancer policy which is key in promoting the quality of life of persons with albinism.
Established a national advocacy network on issues of persons with albinism. Albinism Umbrella advocated for the provision of large print for learners with albinism when writing for their national examinations.
Continued to provide and distribute sunscreen lotions to persons with albinism country wide.
Supported the formation of 6 groups of persons with albinism and linked them to government livelihood programs, particularly the special grant.
It is through Albinism Umbrella advocacy that the first ever employee with albinism at Parliament of Uganda was recruited under the department of Corporate Planning and Strategy.
Existence of a Situation Analysis Report of human rights challenges of persons with albinism in Uganda, which identifies some key challenges affecting the albinism community and makes recommendations to support planning and design of effective strategies for addressing those challenges.
We have expanded our network for inclusivity in service delivery- MGLSD, MOH, MOES, National Council for Persons with Disability, NUDIPU, NAWOU, Parliament of Uganda, EOC, among others.
Secured job placements and provision of start-up kits to some persons with albinism.
Provided legal services and sought justice for some persons with albinism with support from EOC, Bare Foot Law and FIDA Uganda.
Over the past 6 years, Albinism Umbrella has registered an increase in the number of donors from one (2018) to 6 (2023) which has advanced her resource envelope.
