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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.

Before downloading any of our guides, we ask you to please read and adhere to our Disclaimer and Copyright Notice.

(Page last updated 30th March 2020)

Practical Guides for Families


A Clinical Genetics Appointment View
Adoption Guide View
After Diagnosis, What Next View
Behaviour and Sensory Guide View
Bereavement and loss View
Carers Wellbeing View
Communication View
Education View
Feeding View
Further Education, Training And Work View
Grants And Funding View
Holidays Guide View
How to get legal help and advocacy View
Looking After Your Childs Teeth View
Planning Your Next Child View
Puberty View
Self-isolation guide to helpful resources View
Sleep View
Sports Leisure Days Out View
Supporting Siblings Of Children With A Rare Chromosome Disorder View
Teeth Common Concerns View
Therapies View
Toilet Training And Continence View
Transition View
Travel Insurance View
Uniquely different View
Young Carers View