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Useful Resources

This section includes links to other organisations and sources of help & advice you may find useful.

 

For a list of other children’s hospices and other related organisations click here

 

Please note Helen & Douglas House is not responsible for the content of external sites.


Duchenne Family Support Group
Email: dfsg@duchenne.demon.co.uk

http://www.dfsg.org.uk

Clic Sargent
Clic Sargent supports families with children suffering from cancer or leukaemia. http://www.clicsargent.org.uk
 

The Muscular Dystrophy Campaign
The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders. It has pioneered the search for treatments and cures for over 40 years and provides practical, medical and emotional support to people affected by the condition. http://www.muscular-dystrophy.org/ 
 

The Jennifer Trust for Spinal Muscular Atrophy
The Mission of the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) is to be there for everyone affected by or involved with Spinal Muscular Atrophy (SMA), providing support and information, and investing in research. The JTSMA is the only British organisation dedicated to providing support, care, information and the funding of research into SMA. http://www.jtsma.org.uk/

Batten Disease Family Association
The Batten Disease Family Association (BDFA) was created in 1998 to support and help families, carers and professionals, who have contact with a child with Batten disease. http://www.bdfa-uk.org.uk/index.htm 
 

Climb - National Information and Advice Centre for Metabolic Disorders
Children Living with Inherited Metabolic Diseases Tel: 0800 652 3181 Email: info@climb.org.uk http://www.climb.org.uk
 

Parent Project UK
For parents caring for children with Duchenne Muscular Dystrophy. Email: nick@actionduchenne.org

http://www.actionduchenne.org/
 

SWAN - Syndromes Without a Name
Support group for undiagnosed conditions. Tel: 01922 701234 Email: info@undiagnosed.org.uk http://www.undiagnosed.org.uk/aboutus.htm

British Heart Foundation
For help and support with conditions relating to the heart. http://www.bhf.org.uk/index.asp

Contact a Family - Directory of Specific Conditions and Rare Disorders
The Contact a Family Directory Online has lots of information on specific conditions and rare disorders in children and young people. http://www.cafamily.org.uk/medical-information/

 

Give Them A Break

Provide free holiday accommodation to families with children with disabilities. http://www.givethemabreak.co.uk

 

The Brain Tumour Charity

The Brain Tumour Charity is the leading brain tumour charity in the UK. We fund scientific and clinical research into brain tumours and offer information and support to those affected, whilst raising awareness and influencing policy. Our aim is to improve the understanding, diagnosis and treatment of brain tumours.

http://www.thebraintumourcharity.org/

 

Health and public services


UK Transplant
Telephone number to register as a donor: 0845 60 60 400. Email: enquiries@nhsbt.nhs.uk

http://www.uktransplant.org.uk/ukt/default.jsp
 

National Blood Service
To register as a blood donor call 0845 7 711 711. http://www.blood.co.uk

Caring About Carers
This website from the Department of Health provides details about services or benefits affecting carers. http://www.carers.gov.uk/ 
 

DirectGov
This government site brings together information on public services, and includes sections health services, caring for a child or adult and disability. http://www.direct.gov.uk/CaringForSomeone/fs/en 
 

Disability Rights UK

Disability Rights UK works to create a society where everyone with lived experience of disability or health conditions can participate equally as full citizens.

http://disabilityrightsuk.org/


NHS Direct
NHS Direct has a wealth of information about illnesses and conditions and also links to other organisations. http://www.nhsdirect.nhs.uk

Other charities

 

Bereaved Parents' Network
The Bereaved Parents' Network offers support for any parent who has lost a child at any age and in any circumstance. We provide a telephone befriender service, day and weekend events and a regular email newsletter. Tel: (029) 2081 0800 http://www.careforthefamily.org.uk/bpn 
 

Cystic Fibrosis Trust
Switchboard 020 8464 7211 Support Helpline 0845 859 1000 http://www.cftrust.org.uk/ 
 

Contact a Family
Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their health condition. They also enable parents to get in contact with other families, both on a local and national basis. http://www.cafamily.org.uk/index.html 
 

The Carer
TheCarer was formed to offer a unique reference point on advice to carers of all ages and professions. Tips and advice to all carers on getting help, everyday practicalities, accommodation, health issues, money matters and bereavement http://www.thecarer.co.uk

Cruse
Cruse Bereavement Care exists to promote the well-being of bereaved people and to enable anyone bereaved by death to understand their grief and cope with their loss. The organisation provides counselling and support. It offers information, advice, education and training services. Tel: 0870 167 1677 Young persons freephone helpline 0808 808 1677 Email: helpline@cruse.org.uk http://www.cruse.org.uk

Whizz-Kidz
Whizz-Kidz provides specialised mobility transport for children, as well as training, information and advice to change the lives of disabled children. http://www.whizz-kidz.org.uk/
 

The Child Bereavement Trust
This organisation works to help bereaved families. http://www.childbereavement.org.uk/ 

 

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