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What We Do

Our Aim

To provide holistic support to children, young people and families affected by sickle cell disorders and childhood stroke.

Our Vision

A world free of sickle cell induced childhood stroke.

Our Values

Our core values are based on our personal experiences of sickle cell, our zeal and passion to make the lives of children more bearable and enjoyable.

Key facts

  • Sickle cell is the most common genetic disorder in the UK
  • Approximately 1 in 7 adults of African and Caribbean descent in the UK carry the sickle cell gene.
  • Most young people do not know their genotype even in high prevalence areas.
  • 20% of children with sickle cell disease will have a stroke by the age of 16.
  • In 2010/11 NHS Sickle Cell and Thalassemia Screening Programme identified 17,354 women as carriers.

Our Achievements

  • Launching the New Childhood Stroke Guidelines 2017, with the Royal College of Paediatrics and Child Health and the Stroke Association. See page 2
  • Working with the NHS Blood and Transplant to promote blood donations amongst Afro/Caribbean communities. Matthews story
  • Making the drug Exjade widely available for all who need it.
  • Improving emergency care
  • Implementation of Transcranial Doppler (TCD) scanning
  • Making childhood stroke part of the Stroke Specific Education Framework (SSEF)
  • Schools Alliance- an alliance of 30 charities campaigning for better medical care in schools.
  • Parliamentary work in the Houses of Parliament and House of Lords
  • Putting Childhood stroke on the UK Stroke Forum Conference 2011, 2012, 2013
  • TCD awareness amongst clinicians
  • Lots of research – participating and initiating!
  • And most importantly activities that guarantee lots of smiles on children’s faces!

 

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