In January 2020 an exploratory meeting which aimed at discussing the idea of creating a formal global alliance for albinism was held. Unanimous Vote by the 27 Regional and Special Delegates to create a Global Albinism Alliance for albinism was held on 26 January. The vote is a first step to promote solidarity among albinism groups around the world. The 27 regional and special delegates to this meeting elected seven people to conduct a pilot program (Pilot) that would lead to the creation of the Global Albinism Alliance (GAA).
A technical team of four people was to function as a board. Three people were elected to the Secretariat. The Secretariat was to serve as the staff. Ikponwosa Ero, the UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism at the time, was designated the technical advisor to the technical team and secretariat. The Technical Team and Secretariat decided early in the Pilot to act together as an operational board. Ikponwosa Ero advised the Pilot Team throughout the Pilot and the assessment of the Pilot. Fifteen “regional contact points” were identified after the Paris meeting. These regional contact point positions served as a communication link between albinism groups for each region and the Pilot Team. The regional contact points played a key role in promoting a worldwide survey organized by the Pilot Team in June-July 2020.
A small mostly volunteer staff has carried out the work of the Pilot in 2020 and 2021. Major accomplishments
- Co-organized 2020 IAAD online celebration
- Conducted 2021 IAAD online celebration
- Conducted worldwide survey
- Published report on worldwide survey
- Published an executive summary of the worldwide survey report
- Secured seed money to cover direct operating costs
- Secured pledge for funding the first-year cost for a full-time executive director
Ten Objectives for the Pilot Listed Below Were Approved by the Paris Meeting Delegates.
- Test an alliance through a one-year temporary structure
- Develop database on albinism groups around the world
- Provide information to albinism groups and the public on albinism
- Become a resource hub for networking and basic information on and relevant to the albinism worldwide community
- Gather information on what albinism groups around the world would like to see in a permanent alliance
- Develop a comprehensive report on what albinism groups around the world would like to see in a permanent alliance.
- Develop report of all the objectives of the Pilot including recommendations on way forward
- Assess, gather and access fundraising opportunities
- Establish a basic website OR online presence featuring and facilitating above objectives
- Develop and abide by basic working principles: diversity, gender balance, North/South mutual partnership and respect etc.
To advance the capacity of organizations serving people with albinism and their families around the world, and to advocate at the global level to improve the enjoyment of human rights by persons with albinism and their family members
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