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About rare inherited anaemias

The aim of the Rare Inherited Anaemias PSP is to identify current uncertainties in the diagnosis, treatment, management and care delivery of people of all ages with rare inherited anaemias, and the impact on their families, from patient and clinical perspectives, and then prioritise those that patients and clinicians agree are the most important.

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

We want to hear from:

  • children and adults, bearing in mind the possible implications of gathering data from young people;
  • people who live in the United Kingdom, or whose questions have UK relevance.

The extreme rarity of these conditions and the lack of equal access to either diagnosis or treatment for patients across the UK highlight the need to focus on what patients, carers and clinicians feel are the most pressing uncertainties regarding the care of these patients.

For more information, please have a look at the Glossary using the link below.