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Who can join in?

We will address research needs for the diagnosis, treatment, management and care delivery of people of all ages with rare inherited anaemias. 

By Rare Inherited Anaemias, we mean:

  • Diamond-Blackfan Anaemia
  • Congenital Dyserythropoietic Anaemia
  • Congenital Sideroblastic Anaemia
  • Red Cell Membrane Disorders
  • Red Cell Enzyme Disorders
  • Transfusion-Dependent Unexplained Inherited Anaemias

This survey can be answered by anyone who

  • has a rare inherited anaemia listed above;
  • is a carer or family member of someone with it;
  • is a health, or social care, professional caring for people with rare inherited anaemias; or
  • is part of an organisation representing and/ or supporting people with rare inherited anaemias.

Who does this survey not relate to?

We have NOT included sickle cell disease and thalassaemia because, while in some parts of the country these are very rare, in others they are more common and there is much more research being done into these than the conditions listed above.  We have also NOT included Fanconi’s anaemia or aplastic anaemia as these are bone marrow failure syndromes and we are focusing on conditions where anaemia is the predominant problem.

The interim survey

The survey is now closed.