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Rare Voices Report Findings & Discussion Session – 9 December 2023 – 10am to 11am

December 9, 2023 @ 10:00 am - 11:00 am

The Rare Voices report (launched on 14 November 2023) sets out the findings from the first ever national community survey into rare bone marrow conditions.  This survey was a collaborative effort between the following charities:

  • PNH Support
  • The Aplastic Anaemia Trust
  • Fanconi Hope (Fanconi Anaemia)
  • DC Action (Dyskeratosis Congenita and Telomere Biology Disorders)
  • SDS UK (Schwachman Diamond Syndrome)
  • DBA UK (Diamond Blackfan Anaemia)
  • CAN – Congenital Anaemia Network (Red cell enzyme disorders (eg. pyruvate kinase deficiency, G6PD deficiency), Red cell membrane disorders (eg. Hereditary spherocytosis, hereditary elliptocytosis, pyropoikilocytosis), Sideroblastic anaemia (CSA),Congenital Dyserythropoietic Anaemia

On Saturday 9 December (10am to 11am) we welcome patients and families from all the charities/conditions listed above to an online Zoom session from 10am to 11am to hear the main findings, our commitments to addressing the survey findings and our recommendations to our stakeholders to address them too. Attendees will have the opportunity to ask questions and make comments should they wish. We also hope to be able to split patient/carers/family members into Zoom break out rooms with others living with the same condition where they can ask questions relevant to their condition.

To register for the Zoom session please complete this short online form after which you will be emailed the Zoom details.

For any questions please email contact@pnhuk.org.



December 9, 2023
10:00 am - 11:00 am