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
https://teamtelomere.org/diagnosis-management-guidelines/
NCBI
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.
http://www.ncbi.nlm.nih.gov/books/NBK22301/?report=reader
What Is a Telomere?
http://www.yourgenome.org/facts/what-is-a-telomere
Wikipedia
https://en.wikipedia.org/wiki/Dyskeratosis_congenita
Canadian information website – read Matthew’s moving story
http://foundation.bullitproof.com
Other Support Organisations
Gary Woodward Dyskeratosis Congenita 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.
Website: https://www.dyskeratosiscongenita.org.uk/
Email: enquiries@dyskeratosiscongenita.org.uk
The Aplastic Anaemia Trust
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
https://www.theaat.org.uk/better-together-campaign
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.
http://www.geneticalliance.org.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.