We have developed a number of leaflets that may be of interest to patients. Our aim has been to answer the most common questions and concerns in clear, non-technical language.
There are also a number of support groups and organisations that you can contact for advice further information.
Information for patients referred
Learn more about genome sequencing in our videos.
Genome sequence part 1
Discover what your genome is and how the technology behind whole genome sequencing works. This short animation, aimed at young people, explains what genome sequencing is and what happens when patients have their genome sequenced. It is of relevance to patients, their parents and anyone else who wants to learn more about the world of genetics.
Genome sequence part 2
Understand more about how having your genome sequenced can help doctors to find the cause of your condition. In the second animation in our series "My Genome Sequence", we also explain some of the current limitations and uncertainties of genome sequencing.
Access below versions sub-titled in Turkish
Access below versions sub-titled in Bengali
Simplified Chinese versions
Traditional Chinese versions
Modes of inheritance
BRCA Carrier Patient Information Event 2018
Our BRCA carrier patient information event was held on Saturday 24th March 2018 at the Best Western Epping Forest Hotel. Thank you to all of our families who attended this event. We hope that the morning was both informative and helpful. Thank you also to our speakers for giving up their time to attend.
Slides from the presentations given by our speakers Dr Adam Rosenthal, Dr Fazia Gaba and Dr Shaun Haran can be found below:
BRCA UNITE Patient Presentation (3.38 MB)
ARC is the only national charity which provides non-directive support and information to parents throughout the antenatal testing process. Their role is to help parents arrive at the most appropriate decision for them in the context of their family life.
Bowel Cancer UK
Bowel Cancer UK is a national charity which aims to save lives by raising awareness of bowel cancer, campaigning for best treatment and care and providing practical support and advice.
Breakthrough Breast Cancer
A pioneering charity saving lives and changing futures, through research, campaigning and education – removing the fear of breast cancer for good.
Breast Cancer Care
Breast Cancer Care is a UK charity which provides patient support, including information, online discussion forums, contact details and free telephone support groups for carriers of a breast cancer gene, who either have or have not had breast cancer.
Cancer Genetics StoryBank
The StoryBank is an online collection of stories about cancer genetics. It consists of digital stories from patients covering topics such as living with the risk of cancer, compiling a family tree, telling a family member about a cancer diagnosis and making decisions about surgery and screening.
Cancer Research UK
The world's leading charity dedicated to saving lives through research, by discovering new ways to prevent, diagnose and treat cancer.
Children Living with inherited Metabolic Diseases
Climb (Children Living with Inherited Metabolic Diseases) is the United Kingdom's foremost provider of free metabolic disease information to young people, adults, families, professionals and other interested groups.
Contact a Family
CaF is a UK-wide charity providing support, advice and information for families with disabled children.
The Eve Appeal funds research into gynaecological cancer to help develop effective methods of prediction, detection, treatment and care that will help save women's lives not only in the UK but throughout the world.
Genetic Alliance UK
Genetic Alliance UK is a national alliance of patient organisations which support children, families and individuals affected by genetic disorders.
The Society was set up to provide support and information for those affected by GH (Genetic Haemochromatosis).
Macmillan Cancer Support
Macmillan Cancer Support merged with Cancer Backup in 2008. Together they provide quality assured, up-to-date cancer information, written by specialists for patients, relatives and carers. It also provides a free telephone service for questions about cancer and support.
Ovacome is a nationwide support group providing information and support for everyone affected by ovarian cancer.
Syndromes Without a Name
SWAN UK (Syndromes without A Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed conditions.
Target Ovarian Cancer
Target Ovarian Cancer is dedicated to achieving a long and good life for every woman with ovarian cancer.
The Association for Multiple Endocrine Neoplasia Disorders (AMEND)
AMEND is a resource for patients throughout the world who have the rare hereditary conditions of MEN Type 1 or Type 2.
The Polyposis Registry
The St Mark’s Polyposis Registry is the oldest in the world and has the aim of studying polyposis and preventing cancer. They look after over 800 patients who belong to polyposis families and attend St Mark’s, but they are also available to speak to anyone who wishes to obtain information about polyposis.
The Prostate Cancer Charity
The Prostate Cancer Charity provides up-to-date specialist information for men affected by prostate cancer and their friends and families.
Unique is the rare chromosome disorder support group for families affected by any rare chromosome disorder such as deletions, duplications, translocations.
VHL Family Alliance
VHL family alliance is dedicated to improving diagnosis, treatment, and quality of life, for individuals and families affected by Von Hippel-Lindau disease.