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.
Our focus
DC Action is a UK Registered Charity (Charity Number 1167150). At DC Action, we focus our efforts on three core areas:
Advocacy
Our advocacy work focuses on research and expert care and treatments.
Education
We aim to raise awareness of DC amongst medical professionals, patients and the public.
Support
We provide support and advice for people affected by Dyskeratosis Congenita.
Our Team
Professor Inderjeet Dokal
Dr. Hilary Longhurst
Dr. Jane Paxton
Professor Tom Vulliamy
Professor Graeme Alexander
Wendy Adams
Get in touch
LATEST NEWS
Help with managing stress
If you’re living with aplastic anaemia, or other bone marrow failures, including those associated with dyskeratosis congenita, you will likely be dealing with a lot of stress and uncertainty. Whether you have the condition yourself or you’re supporting a close family member, it’s important to look after your mental health and find ways to manage[…]
Fundraise for DC Action!
As part of the Better Together Consortium, DC Action will be part of a SuperRare fundraising campaign taking place in February and March 2023. We would love to have as many people as possible taking part! It is completely up to you how you fundraise – it can be anything from a cake sale at[…]
Opportunity to take part in National Community Survey of rare bone marrow conditions
We are currently running the first ever National Community Survey of people living in the UK with bone marrow conditions, or caring for those with rare bone marrow conditions, including those affected by Dyskeratosis Congenita. The National Community Survey aims to engage as many people as possible across the UK who are affected by a[…]
DC Action contributes to DEMISTIFI study looking into fibrosis
Did you know that scarring or fibrosis can affect different organs in the body and is a factor in many common medical conditions and rarer ones too, including Telomere Biology Disorders? The DEMISTIFI study is an exciting new research project that aims to understand the cause of fibrosis in different organs and conditions. Information[…]
US National Cancer Institute survey for DC patients and carers
Are your needs as a DC patient or carer being met? The US National Cancer Institute is carrying out a worldwide survey of patients and carers looking after someone with dyskeratosis congenital or a related telomere biology disorder. If you are 18 years or older, please take 20 minutes to fill in the survey, at[…]
Gene therapy study starts for bone marrow failure in dyskeratosis congenita (DC)
Dr Kasiani Myers, from Cincinnati has treated the first patient with DC-related bone marrow failure, with an experimental new gene therapy (EXG34217). The trial is in its very early, safety testing stages but we hope that the treatment will help treat bone marrow failure. The trial is open to adults (18 or older) with DC[…]
Healthy Bone Marrow Alliance bids for Lottery funding to strengthen community support
DC Action is working with six other small, rare bone marrow failure charities as part of the Together for Healthy Bone Marrow Alliance. Other members are The Aplastic Anaemia Trust, PNH Support, Congenital Anaemia Network (CAN), DBA UK, SDS UK and Fanconi Hope. Meeting regularly, we share best practice and learn from each other’s experiences. This is particularly valuable as[…]
Data Privacy Statement 2021
Data Privacy Statement 20 November 2021 CHARITY NUMBER: 1167150 DC Action contacts, friends and supporters 1. Your personal data – what is it? Personal details include any information relating directly to an individual. Examples are: name, phone number, address, e-mail address, bank account details, photographs etc. You are the ‘Data Subject’. The processing of[…]
DC Action signs joint letter to the government from the Together for Healthy Marrow Alliance
An open letter to the UK’s Chief Medical Officers from the Together for Healthy Marrow Alliance 12th July 2021 Professor Chris Whitty, Chief Medical Officer, England Dr Frank Atherton, Chief Medical Officer, Wales Dr Gregor Smith, Chief Medical Officer, Scotland Dr Michael McBride, Chief Medical Officer, Northern Ireland Dear Chief Medical Officers, We are an[…]
Telomere testing just got easier
Dyskeratosis Congenita (DC) is caused by premature shortening of the telomeres, and tests for telomere length are important in making the diagnosis. Accurate telomere length testing can be difficult, but scientists are making promising advances in this area. Researchers at Cardiff University and Queen Mary University of London have developed a rapid test for the[…]