Understanding Rare Chromosome and Gene Disorders

Keeping you informed

To read and download any of our practical guides for families, including our brand new Self-Isolation Resources Guide, click View below. If you would like to see a new topic added to this range of guides, please let us know by emailing with your ideas. To support our work in this area to help us produce more resources for families, please click here.

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(Page last updated 30th March 2020)

Practical Guides for Families


A Clinical Genetics Appointment View
Adoption Guide View
After Diagnosis, What Next? Non-UK edition View
After Diagnosis, What Next? UK edition View
Bereavement and loss View
Carers Wellbeing View
Challenging Behaviour View
Communication View
Education View
Feeding View
Further Education, Training And Work View
Grants And Funding View
Hearing loss View
Holidays Guide View
How to get legal help and advocacy View
Looking After Your Childs Teeth View
Mental Health and Wellbeing View
Planning Your Next Child View
Prenatal genetic testing and diagnosis View
Puberty View
Self-isolation guide to helpful resources View
Sleep View
Sports Leisure Days Out View
Supporting Siblings of Children with a Rare Genetic Condition View
Teeth Common Concerns View
Therapies View
Toilet Training And Continence View
Transition (from child to adult services) View
Travel Insurance View
Uniquely different View
Young Carers View