Useful Resources

Knowledge is power. Information is liberating. Education is the premise of progress, in every society, in every family.

Kofi Annan

Free downloadable documents:

Campaign For My Brain’s “HD & Me”

Campaign For My Brain’s “All About My Brain”

Motor Neurone Disease Association “Understanding My Needs”

PSP ‘All About Me’ Document

Alzheimer’s Society ‘This Is Me’ document

Hospital Passport NHS Document for individuals with Learning Disabilities

Headway Brain Injury Card

Huntington’s disease:

Huntington’s Disease Association

Huntingon’s Disease Youth Organisation

You & Me HD Blog Article

Our Life in HD Blog Article

I’m Not Drunk: Lifestyle blog

Reachingout.love Blog Articles

Huntington’s Disease Association Advice

Family planning advice for those at risk of Huntington’s Disease

Huntington’s Disease Youth Association Advice

Parkinson’s disease:

Parkinson’s Disease Initiative

Parkinson’s Society UK

Motor Neurone Disease:

Pain in the ‘ALS’: Article

MND Association

Understanding my needs document from the MND Association

Multiple Sclerosis:

Overcoming MS

MS Society UK

Dementia:

Alzheimer’s Society

Dementia Carers Charity

Young Dementia UK

Information on neurological diseases:

Genetic Alliance UK

Disabled World: A to Z of Neurological Diseases

National Organisation For Rare Disorders

Support avenues:

The Samaritans

Carers UK

Public Health campaign ‘We are Undefeatable’

Care advice:

NHS England: Continuing Healthcare Funding

Care to be different: Resource on NHS Healthcare funding

Government information on the responsibilities of local authorities within the Care Act:

Resources for genetic testing:

NHS advice on genetic testing:

Advice from the Genetic Alliance on Pre-implantation Genetic Diagnosis:

Resources for young people:

Gloucestershire Young Carers

The Honeypot Children’s Charity

Childrens Society

Kids.org

Resources for professionals or employed carers:

Understanding Neurology

Huntington’s Disease Association resources for professionals

Epilepsy UK resources for professionals

Parkinson’s UK resources for professionals

Progressive Supranuclear Palsy Association resources for professionals

Charities:

PSP Association

MSA Trust

Alzheimer’s Society

Cerebral Palsy

Brain Injury Association UK

The Brain Charity

Stroke Association

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