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.


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

Join the Alliance

Let us know about your albinism organization.

Group of diverse young people in volunteer T-shirts cheerfully smiling and looking at camera