DC Action

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DC Action DC Action is a charity focused on improving the understanding and treatment of Dyskeratosis Congenita and Telomere Biology Disorders.

We aim to raise awareness of the condition within the medical community and improve patient advocacy. DC Action is a charitable organisation focused on improving the understanding and treatment of Dyskeratosis Congenita (DC) in the UK. We aim to raise awareness of the condition within the medical community, and for patients and their families. Our activities focus on three core areas:

Advocacy

Our advocacy work focuses on research and expert care and treatments. Education

Through education, we aim to raise awareness of Dyskeratosis Congenita and telomere repair defects and their management amongst medical professionals, patients and the public. Support

We provide support, coordination and advice for people affected by Dyskeratosis Congenita and telomere repair defects. We would like to hear from patients, their families, and their medical advisors about their experiences, and connect people in the UK who have this disorder in order to build awareness of the condition outside of the community. To contribute and support our cause, please contact us at [email protected].

If you're living with a Telomere Biology Disorder or helping someone who is, please be sure to join our next Community M...
22/06/2026

If you're living with a Telomere Biology Disorder or helping someone who is, please be sure to join our next Community Meeting on Tuesday 14th July at 7pm. We need you to tell us how your condition is managed to inform development of a new care pathway. Register here:

Our chance for better NHS services: Diagnosis and Management Pathway for Telomere Biology Disorders – Zoom, Tue 14 Jul 2026 - Our chance for better NHS services: Diagnosis and Management Pathway for Telomere Biology DisordersWith Dr Katie Snape, Principal Clinician at Genomics England Consultant G...

Great North Run- Sun 13 Sept 2026 Your chance to attempt this iconic half marathon running from Newcastle, across the Ty...
22/06/2026

Great North Run- Sun 13 Sept 2026
Your chance to attempt this iconic half marathon running from Newcastle, across the Tyne Bridge to the South Shields coast.
We have some last minute places available to run for but need to register quickly!

The world’s biggest half marathon. 60,000 runners on one iconic route. View event information and find charity places here.

01/06/2026

Save the Date. Please be sure to join us for the next DC Action Community Meeting on Tuesday July 14th @1900. We need you to to tell us about how your condition is managed to inform development of a new care pathway.

Keeping Emotionally HealthyInformation Session and Q&A with Clarise PattisonClarise is a breathwork guide, mindfulness t...
01/06/2026

Keeping Emotionally Healthy
Information Session and Q&A with Clarise Pattison

Clarise is a breathwork guide, mindfulness teacher, and coach who invites people into deeper connection with themselves through accessible practices.

This session is taking place online on Friday, 5th June between 1 and 2pm and is open It is open to all those affected by the conditions in the Better Together alliance whether it’s patients themselves or those in their circle of support.

Sign up here

Learn more about how to keep emotionally healthy and maintain your mental wellbeing while living with a rare bone marrow failure in this online information session and Q&A, hosted by Clarise Pattison.

https://www.theaat.org.uk/Event/moving-forward-course-mar26
22/03/2026

https://www.theaat.org.uk/Event/moving-forward-course-mar26

Living with a rare illness can leave you feeling stuck and mourning for the life you thought you would be living. This seven-week course will help you to learn to find new paths and feel you are moving towards something again.

Matt has been clocking up his miles during Super Rare. He has set himself a challenge to run 1500k this year!!Get Inspir...
13/03/2026

Matt has been clocking up his miles during Super Rare. He has set himself a challenge to run 1500k this year!!

Get Inspired & Join In - https://super-rare.org/events/

Happy Rare Disease Day!DC Action is here for anyone affected by Dyskeratosis Congenita in the UK.Whether you’ve been dia...
28/02/2026

Happy Rare Disease Day!

DC Action is here for anyone affected by Dyskeratosis Congenita in the UK.

Whether you’ve been diagnosed yourself, or you’re supporting a friend or a family member, you can get in touch with us.

Visit our website for more information, including support available dcaction.org or contact us at [email protected]

Colin is joining us at the walk in Bath. Thank you Colin.There is still time to join in with Super Rare 2026. Join one o...
24/02/2026

Colin is joining us at the walk in Bath. Thank you Colin.

There is still time to join in with Super Rare 2026. Join one of our walks or do your own fundraiser.

https://super-rare.org/

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