Further Reading:

DC Outreach Guidelines

2015 dyskeratosis congenita guidelines written, under the auspices of DC Outreach, by experts in the field.  A detailed description of practical diagnosis, monitoring and management of complications of dyskeratosis congenita, organised into chapters.


Comprehensive review of clinical features of dyskeratosis congenita by Dr Sharon A. Savage of the NIH, who has extensive experience caring for patients with dyskeratosis congenita.

What Is a Telomere?


Canadian information website – read Matthew’s moving story


Other Support Organisations

DC Outreach (now known as Team Telomere)

DC Outreach

Dyskeratosis Congenita Outreach, Inc. is a US-based grassroots, volunteer-operated foundation serving patients and families affected by DC around the world. DCO emerged in 2008 following a DC Clinical Research Workshop at the National Institutes of Health in Bethesda, Md., which brought together families, scientists and clinicians. At the gathering, participants pledged to organize a support group for affected families. Those initial participants started to talk regularly and a year later gained certification as a (501(c)3 not-for-profit, independent from any medical institute.


Gary Woodward Dyskeratosis Congenita Trust

Gary Woodward Trust

The Gary Woodward Dyskeratosis Congenita Trust is a 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.




The Aplastic Anaemia TrustScreen Shot 2019-03-17 at 3.57.31 PM

The Aplastic Anaemia Trust is a charity supporting patients and families affected by aplastic anaemia.


Genetic Alliance UK

Genetic Alliance UK

Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 180 patient organisations.


Rare Disease UK

Rare Disease UK

RDUK is the national alliance for people with rare diseases and all who support them. It was established by Genetic Alliance UK, the national charity of over 160 patient organisations supporting all those affected by genetic conditions, in conjunction with other key stakeholders in November 2008.