Further Reading:

Team Telomere is a US-based grassroots, volunteer-operated foundation serving patients and families affected by Telomere Biology Disorders around the world. Formerly known as DC Outreach, the organisation emerged following a Dyskeratosis congenita Clinical Research Workshop in the USA at the National Institutes of Health in Bethesda, Maryland, in 2008 which brought together families, scientists and clinicians. Participants pledged to organise 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.

Team Telomere Telomere Biology Disorders: Diagnosis & Management Guidelines

Telomere Biology Disorders: Diagnosis and Management Guidelines, Second Edition, is a comprehensive reference manual for patients, physicians, and researchers.


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

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.

DCAction is part of a consortium  of 6 charities who work together to support people living with rare diseases that can affect the bone marrow.

Better Together for Healthy Marrow

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.