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Brighton & Sussex Medical School

Resources

Resources

Useful links, information for carers and local services. 

myTUBE

A great resource for patient and professionals about Gastrostomy tubes.
mytube.mymnd.org.uk 

myNIV

The complimentary site for NIV, also developed by the Sheffield SiTRAN team.  
niv.mymnd.org.uk

Patients Like Me

A forum for people with MND (or other health conditions) where they can sign up and share their experiences, treatments and symptoms with other people like them around the world.
www.patientslikeme.com

ALS Untangled

Helps people with MND to review alternative and unlicensed treatments.
www.alsuntangled.com

Rare Dementia Support

Offers support for people and their families living with rare dementias, including  Frontotemporal Dementia.
www.raredementiasupport.org

National Institute for Health and Care Excellence (NICE)

A guideline on MND, published 2016. 
www.nice.org.uk/guidance/ng42 

Alternative & Augmentative Communication (AAC)

Chailey AAC Hub: Specialist AAC assessment and provision for Sussex & Surrey  
www.sussexcommunity.nhs.uk/services/chailey-communication-aidservice

Environmental Controls

West Sussex
www.stgeorges.nhs.uk

East Sussex
www.kmpt.nhs.uk 

One in 400 - Living with MND

www.onein400.com/blog