About Dyskeratosis Congenita (DC)
Dyskeratosis congenita is an inherited condition which causes premature ageing of cells and organs due to telomere (the tips of chromosomes) repair abnormalities. This condition can lead to bone marrow failure (anaemia, low white blood count and platelet-blood clotting problems), lung fibrosis, liver cirrhosis and other conditions. It can severely affect children, as well as adults later in life. To find out more, please click on 'Dyskeratosis Congenita' in the menu bar above.
DC Action is a UK Registered Charity (Charity Number 1167150). At DC Action, we focus our efforts on three core areas:
Our advocacy work focuses on research and expert care and treatments.
We aim to raise awareness of DC amongst medical professionals, patients and the public.
We provide support and advice for people affected by Dyskeratosis Congenita.
Professor Inderjeet Dokal
Erin Niimi Longhurst
Dr. Jane Paxton
Professor Tom Vulliamy
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Great excitement today at DC Action – the patient support group for dyskeratosis congenita and telomere repair defects; a study published in the New England Journal of Medicine has shown that Danazol, a cheap and widely available medication, can reverse the shortening of telomeres that leads to the premature aging responsible for their illness. Champagne[…]
If you are affected by lung complications of Dyskeratosis congenita, this is your chance to contribute to a European initiative. ELF is supporting healthcare professionals and patient partners to put together an application for funding for a European Reference Network on rare lung conditions (ERN-LUNG). The network will join together medical experts and specialist centres across[…]