Useful organisations
You will need access to a range of information and support throughout your diagnosis, treatment and care. This section lists organisations which may assist with specific issues, along with descriptions of what they do and how to get in touch.
| Subject | Name | Contact details |
European patient groups |
TREAT-NMD Neuromuscular Network |
www.treat-nmd.eu/patients/patientadvocacy/patient-org/ |
International support organisations |
Muscular Dystrophy- fighting disease with information | http://dystrophy.com/muscular-dystrophy/Organizations for Muscular Dystrophy |
| Information and support in Nepal | Muscular Dystrophy Care Society Nepal | http://www.mdchildcare.com.np/ |
Advice on adaptations from an O.T- (may charge) |
Access Independent |
Email: ot@accessindependent.co.uk
Tel: 01223 501603 |
Access issues for assistance dog users |
Assistance Dogs UK |
Tel: (01844) 348100 |
Local displays of equipment |
Assist UK |
Tel:0870 770 2866 |
Advice on home adaptations |
Care and Repair England |
www.careandrepair-england.org.uk Tel: 0115 950 6500 Email:Catriona Saxton |
| Counselling and Psychotherapists | Counselling Directory | www.counselling-directory.org.uk |
| Design for accessibility | Centre for Accessible Environments (CAE) |
Tel:020 7840 0125 Email:Info@cae.org.uk |
| Equipment- how to find it | Disabled Living Foundation (DLF) |
Tel:0845 130 9177 (Mon-Fri, 10am-4pm) Email:info@dlf.org.uk |
|
Home accessibility |
Foundations |
Tel:01457 891909 Email:foundations@cel.co.uk |
| Help with home adaptations | Houseproud |
0800 783 7569 Email:info@hitrust.org |
| Architects for adaptations |
House Adaptation Advisory Service (HAAS) |
Tel:020 7840 0125 Email:info@cae.org.uk |
| Independent advocacy schemes | Action for Advocacy |
Tel:020 7820 7868 |
| Advocacy partnership schemes | Advocacy Resource Exchange (ARX) |
Tel:02380 234 904 |
| Advocacy for young people | National Youth Advocacy Service |
Tel:0800 61 61 01 Email:help@nyas.net |
| Benefits information | Benefits and work limited | www.benefitsandwork.co.uk |
| Benefit enquiry line | Department of Work and Pensions – DWP |
Tel: 0800 882 200 |
| Information about legal rights | Citizens Advice Bureaux |
Helpline: 0844 848 9600 |
| Guides to grants | Directory of Social Change |
Tel: 0845 077 7707 |
| Information on benefits rights | Disability Alliance |
Email:office.da@dial.pipex.com Information line: 020 7247 8776 |
| Information on benefits | Disability Benefits Limited |
Tel: 0845 712 3456 |
| Information and advocacy in Sheffield | Independent Living Sheffield | |
| Advice for families of disabled children in Caerphilly | The Caerphilly Information and Advice Service |
029 20867447 |
| Support for children living with life threatening illnesses | Camp Simcha |
|
| Hypnotherapy Directory | Free, confidential service providing details of local hypnotherapists | www.hypnotherapy-directory.org.uk |
