Information and support

Leaflet

Von Hippel-Lindau Disease (pdf)

Support groups

• Genetic Alliance UK
• Headlines Craniofacial Support
• Rare Disease UK
• SWAN UK
• Unique - Understanding Rare Chromosome and Gene Disorders

Specialist support

Antenatal

Antenatal Results and Choices (ARC) - non-directive information and support before, during and after antenatal screening

Cancer

Bowel Cancer and Lynch Sydrome

Bowel Cancer | Lynch Syndrome UK

Bowel Cancer and Family History

Family history | Risk factors | About bowel cancer | Bowel Cancer UK

Cancer Research

Can cancer be prevented? | How to reduce your risk of cancer

Maggies

Maggie's, Oxford | Maggie's

Cystic Fibrosis

Cystic Fibrosis Trust

Endocrine Neoplasia Disorders

Home - AMEND

Huntington's Disease

Huntington's Disease Association

Li Fraumeni Syndrome

George Pantziarka TP53 Trust - Li Fraumeni Syndrome - supporting families and individuals with this cancer predisposition syndrome

Mental health

Private Therapy - Rareminds

Prostate Cancer

Prostate Cancer UK

PTEN Hereditary Cancer Support

PTEN UK & Ireland ​Patient Group