We are a small charity registered in 2007 which aims to bridge the gap and offer support, education and understanding for anyone who is involved in this complex condition.

What are our aims?

  • Provide support

  • Provide education (for individuals, families, carers and health care professionals)

  • Produce leaflets about the condition

  • Provide updated information via our website

  • Provide further details about the Trust


AIMS OF 2020

  • Support research into Dyskeratosis Congenita.

  • Organise a  Family Support day.

  • Develop a new information leaflet for Health Care Professionals, Carers and Individuals affected by Dyskeratosis Congenita.

  • Develop a new children’s leaflet

  • Fundraise

If you have any suggestions, please contact us!