The Steering Committee

The steering committee comprises patients and patient advocates who propose awareness initiatives, provide concepts for support and education resources, share their experiences and learnings from advocacy heritage, and endorse materials before they are circulated among the rare anaemia community.


Thalassaemia International Federation (TIF)
Sickle Cell Disease Association of America (SCDAA)
wAIHA Warriors

The Committee’s Work

To ensure the whole community is represented by RAIN and to encourage adoption, the steering committee will evolve to include representatives from across the rare anaemia community, globally, including the following:

Patients and



Industry representatives
(as observers)

The RAIN steering committee develops and endorses all RAIN activities by:

  • Providing guidance and recommendations for RAIN projects
  • Sharing experiences and learnings from advocacy heritage
  • Attending steering committee meetings throughout the year and provide insights from current experience
  • Proposing innovative solutions/ ideas for information, resources, and programmes
  • Acting as ambassadors for RAIN



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