Genomics toolkit

Patient resources

Cancer websites

These all include information about cancer family history, and linked genes, including when people should seek advice from their GP. They also include information regarding suspicious symptoms and lifestyle advice to reduce risk, supporting self-care.

• MacMillan: Cancer Genetics Resources
• Cancer research UK: Family History and Inherited Cancer Genes
• Ovacome: Testing for the BRCA Gene Fault

Chemo-prevention for women with no history of breast cancer

NICE decision aids:  these are aimed at women who are at above-population risk of developing breast cancer, who have been assessed as eligible by secondary or tertiary care for chemoprophylactic Tamoxifen or Anastrazole.  They include useful information and comparison tables to help women make choices regarding whether or which medication to consider.

• Chemo-prevention: NICE tamoxifen decision aid
• Chemoprophylaxis: UK Cancer Genetics Group Leaflets

Rare Disease websites

Genetic Alliance is an umbrella organisation for 200 organisations, including Rare Disease UK, and Syndromes Without A Name, and support groups for individual rare diseases.  These provide information and support for patients and families affected by a genetic condition and are also a source of information and practical advice for healthcare professionals.

Unique is a charity supporting and informing families with a rare chromosome disorder, and some single gene disorders. 

Unique also has a list of guides for healthcare professionals for individual chromosomal disorders (including deletions and duplications) in English and other languages.