From our recently published community survey results, Rare Voices, we know that more than of half our collective community flagged a need for better access to information regarding benefit eligibility. With thanks to The National Lottery Community Fund, we are pleased to be able to bring you access to a benefit advice and support service, to[…]


M4RD and Beacon for Rare Disease pairs a medical student with someone with personal or family experience of a rare disease. Hilary took part in 2023-4. She chatted on zoom with Holly, a medical student from Queen Mary, University of London. Holly was very interested in dyskeratosis congenita and has submitted her essay. We will[…]

Rare Voices Report Findings & Discussion Session Saturday 9 December 2023 – 10am to 11am

One of our Better Together sister charities, PNH Support, has arranged a Zoom session for our community on Saturday 9 December at 10am to 11am to present the Rare Voices main findings and to answer questions. You can register for this event here:

Managing Stress

Managing stress and uncertainty course with Lesley Howells

If you’re living with a rare condition, whether you have it yourself or you’re supporting a close family member, you will likely be dealing with a lot of stress and uncertainty. Brought to you as part of the Better Together Alliance Project, this course is designed to help you to deal with the emotional burden of living with these conditions.  Event[…]

What is BIG DATA?

What is BIG DATA?

Demistifying the use of patient health data in research:   Join this virtual meeting on Tues 5 December 6-7.30pm.  The UK National Health Service provides lifelong health care for almost everyone in the country and the anonymous data from the NHS has proved uniquely powerful in helping the world find answers to some of the[…]

Rare Voices

Rare Voices Survey Report

Thank you to all the DC Action members who took part in this survey to describe your experience of living with dyskeratosis congenita, along with members of our sister charities, all of whom support families affected by bone marrow failure (a common complication of dyskeratosis congenita).   You can read the report here. It’s our[…]

Be sure to get boosted for Covid and Flu

Autumn 2023 From 18 September, the NHS will start to invite people in priority order of risk and those eligible will be able to book an appointment on the National Booking Service. The NHS winter flu and COVID-19 vaccination programme provides vital protection to those eligible and their families over winter, keeping people from[…]

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[…]

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[…]