We strive to keep our links up to date and continously add links that would be of interest to our users but if perhaps you are aware of a link that you feel may be of interst to others please contact us with details.
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Arterio Venous Malformation and Aneurysm Support |
| www.cyberknifesupport.org/avm.html |
| An excellent website setup up by Thaye, a 30 year old spinal AVM survivor from the United states. The website shares other AVM patients experiences and offers information on the condition. |
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AVM/Aneurysm & Brain Injury Information |
| www.angelfire.com/id/candygirl/avmlinks.html |
| This is an personal site developed by Candy an American AVM Survivor. The site is informative, with a huge resource of links.
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Benefits Advice |
| www.benefitsandwork.co.uk |
| Welfare benefits and employment law information and links, especially for people with long-term physical or mental health conditions, carers and support workers.
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Birthmarks US |
| www.birthmarks.us |
| Vascular Anomalies (Birthmarks) consist of various congenital lesions ranging from simple skin discolorations to large devastating malformations. These conditions can be grouped as heamangiomas and vascular malformations and this American non commercial website offers information and links reagrding this matter. |
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Brain and Spine Foundation |
| www.brainandspine.org.uk |
| Established in 1992 to develop research, education and information programmes aimed at improving the prevention, treatment and care of people affected by disorders of the brain and spine. A UK website offering booklets on a number of conditions.
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Brain Help |
| www.brainhelp.co.uk |
| Brain Help is an excellent Scottish website addressing the challenges faced as a result of brain haemorrhage or brain injury for sufferers, their families and carers.
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Cavernoma Alliance UK |
| www.cavernoma.org.uk/home.html |
| Created by people affected by cavernous angioma otherwise known as cerebral cavernous malformations or cavernomas. Their mission is to improve the quality of life for those affected by condition. |
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Chest Heart & Stroke Scotland |
| www.chss.org.uk |
| Chest, Heart and Stroke Scotland aims to improve the quality of life for people in Scotland affected by chest, heart and stroke illness through medical research, advice and information, and support in the community. |
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Circualtion Foundation |
| circulationfoundation.org.uk |
| The Circulation Foundation provide patient information and try to raise awareness of the impact and prevalence of vascular disease. It also encourages, promotes and assists research.
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Contact a Family |
| http://www.cafamily.org.uk/index.html |
| The only UK charity providing advice and support to parents and family members whatever the medical condition of their child.
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Cyberknife Patient Support Group |
| www.cyberknife.com/ |
| The CyberKnife Patient Support Group is a nonprofit organization dedicated to supporting people whose lives have been, or could be, positively affected by the utilization of the CyberKnife Stereotactic Radiosurgery/Radiotherapy System.
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Different Strokes |
| www.differentstrokes.co.uk/ |
| A Charity Set up by Younger Stroke Survivors for Young Stroke Survivors. Different Strokes is a registered charity providing a unique, free service to younger stroke survivors throughout the United Kingdom.
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Directgov |
| www.direct.gov.uk/Homepage/fs/en |
| Directgov is the place to turn to for the latest and widest range of public service information. Comprehensive information and supports about benefits,childcare, diability rights and lots more.
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Disabled Living Foundation |
| http://www.dlf.org.uk |
| The Disabled Living Foundation (DLF) is a national charity that provides free, impartial advice about all types of equipment to older and disabled people, their carers and families. From starlifts to walk-in baths, jar openers to tap turners, bathseats to walking sticks, the DLF can help you find equipment solutions that enable you to stay active and independent.
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Durham Reading & Exploration (DREX) Training |
| www.dur.ac.uk/psychology/research/drex/ |
| The psychology department at Durham University we have been investigating homonymous visual field defects and have been developing training programs that may be used in the rehabilitation of such impairments. The aim of our training is not to try and restore the lost vision but rather to help people to learn compensatory strategies to help them overcome the difficulties which they experience due to the visual deficit. |
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Epilepsy Action |
| www.epilepsy.org.uk/index.html |
| Epilepsy Action is the working name for British Epilepsy Association. The website contains everything you need to know about epilepsy and if you can't find something, email them using their Email Helpline service.
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Gamma Knife Centre Cromwell Hospital |
| www.gammaknife.co.uk/ |
| The Cromwell Hospital is one Britain's leading private hospitals, with a great range of technology. The site offers information on Gamma Knife treatment.
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Headway |
| www.headway.org.uk |
| Headway is a charity set up to give help and support to people affected by brain injury. Their mission is to promote understanding of all aspects brain injury and to provide information, support and services to people affected, their families and carers.
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HemiHelp |
| www.hemihelp.org.uk/ |
| HemiHelp was formed by a group of parents in 1990 to offer information and support to children and young people with hemiplegia, to their families or carers and to the professionals who work with them and to increase general awareness of the condition. An Excellent website with a helpline staffed by experienced volunteers who themselves are parents of children with hemiplegia.
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MEDIPAL |
| www.medipal.org.uk/ |
| MediPAL is a hard wearing plastic medical ID card showing: Medical History,
Current Medication, Allergies, Contact Name and Number, GP Details, Blood Type. Medipal is used by: People on medication, - eg heart disease, stroke, diabetes, cancer etc
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National Centre for Stereotactic Radiosurgery |
| www.gammaknife.org.uk/ |
| This website offers excellent patient friendly information about the procedure and a profiles on the specialists at Sheffield. It offers images of the equipmet used, a structured plan of what to expect on treatment day as. Well worth a visit |
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Newcastle Aneurysm & AVM Support (Australia) |
| www.naavm.org/site/index.cfm |
| This site has been created with the aim of providing some basic information, links and contacts to Aneurysm and AVM sufferers, survivors and their families. But offers so much more, in my opinion it is well worth a visit.
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Salisbury Functional Electrical Stimulation (FES) |
| www.salisburyfes.com |
| This website offers information and support to those interested in Functional Electrical Stimulation. FES is a means of producing contractions in muscles, paralysed due to central nervous system lesions, by means of electrical stimulation. Worth a visit
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Scottish Intracranial Vascular Malformation Study |
| www.saivms.scot.nhs.uk |
| SIVMS is a collaborative medical research study running in Scotland. There are a number of useful links available from this site. It is well worth a visit and you may be able to offer your help and support to the ongoing study if you live in Scotland. |
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STURGE WEBER UK |
| www.sturgeweber.org.uk |
| Charity offering support to those affected by Sturge Weber syndrome, a rare neurological disorder of unknown incidence and origin. Sturge Weber is usually indicated by a birthmark(port wine stain) somewhere on the face, usually involving the eye and forehead, also similar blood vessels on the brain, called an angioma. |
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The Hereditary Haemorrhagic Telangiectasia Self Help Group |
| www.telangiectasia.co.uk/ |
| The Telangiectasia Self Help Group was founded in 1985 to maintain a register of sufferers and to put affected families in touch with one another. ( HHT ) also known as Osler-Weber-Rendu disease, was first described over 100 years ago. It is due to a faulty gene and is very variable causing some people considerable distress whilst others escape with much less severe problems. For many patients, nosebleeds are the main problem although bleeding from the lining of the stomach and intestines occurs in about 20% of cases. |
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The MedicAlert Foundation |
| www.medicalert.org.uk/default.asp |
| MedicAlert® is the only non-profit making, registered charity providing a life-saving identification system for individuals with hidden medical conditions and allergies. This takes the form of body-worn bracelets or necklets (known as MedicAlert® Emblems) bearing the MedicAlert® symbol on the disc and supported by a 24 hour emergency telephone service. |
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The Stroke Association |
| www.stroke.org.uk |
| The only national charity solely concerned with combating stroke in people of all ages. It funds research into prevention, treatment and better methods of rehabilitation, and helps stroke patients and their families directly through its community services. |
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Tourism for All |
| www.tourismforall.org.uk |
| Information to people with disabilities and older people in relation to accessible accommodation and other tourism services.
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UK Self Help Groups Information |
| www.ukselfhelp.info |
| A comprehensive directory of Self Help Groups working throughout the United Kingdom |
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Val Hennessy Trust |
| www.vht.org.uk/ |
| The Trust based in Coventry is a local charity founded to provide information, support and advice to individuals and their careers who have been affected by the condition of Subarachnoid Haemorrhage (SAH). They provide up to date information about the diagnosis and causes of Subarachnoid Haemorrhage. |
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Vein of Galen |
| www.veinofgalen.co.uk |
| The purpose of this website is to promote awareness of the Vein Of Galen malformation and to offer support via the Parents Support Group. |
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West Georgia Anerysm & AVM Support |
| www.westga.edu/~wmaples/ |
| The purpose of this site is not to echo data from many other informative Web pages, but instead, to be a place for survivors and their families to exchange experiences, pre- and post operative. |