Our members

Action for ME
272 Bath Street
Glasgow
G2 4JR
Tel: 0141 353 9545
E-mail: susan.webster@afme.org.uk
www.afme.org.uk
Contact: Susan Webster

Action for ME

Action for ME is the UK's leading charity dedicated to improving the lives of people with ME. The organisation has been at the forefront of the campaign for more research, better treatments and services since 1987, and provide information and support to people affected by ME.

Alzheimer Scotland - Action on Dementia
22 Drumsheugh Gardens
Edinburgh
EH3 7RB
Tel: 0131 243 1453
E-mail: alzheimer@alzscot.org
www.alzscot.org
Contact: Lindsay Kinnaird, Policy and Research Officer

Alzheimer Scotland - Action on Dementia

Alzheimer Scotland is the leading dementia organisation in Scotland. We campaign for the rights of people with dementia and their families and provide an extensive range of innovative and personalised support services.

Our aims:
• To be the national and local voice of and for people with dementia and their carers in Scotland;
• To improve public policies for the benefit of people with dementia and their carers;
• To provide and to secure the provision of high quality services for people with dementia;
• To provide and to secure the provision of high quality services for carers of people with dementia.

Ataxia UK
Lincoln House
Kennington Park, 1 -3 Brixton Road
London
SW9 6DE
Tel: 020 7582 1444
E-mail: office@ataxia.org.uk
www.ataxia.org.uk

Ataxia UK

Ataxia UK is a national medical research charity for people affected by ataxia, a neurological condition that influences balance, speech and co-ordination. We fund research to develop treatments and find a cure. We provide services and support for those with ataxia, their families and carers. At least 10,000 adults in the UK have a form of ataxia and there is currently no cure.

Helpline: 0845 644 0606

Brain Tumour Action
25 Ann Street
Edinburgh
EH4 1PL
Tel: 0131 466 3116
E-mail: administrator@braintumouraction.org.uk
www.braintumouraction.org.uk
Contact: Lynne Barty

Brain Tumour Action

Brain Tumour Action is here to assist brain tumour patients, relatives, carers, educators and researchers. We provide help, produce information, fund research, support nurse training and work towards a day when brain tumours are fully understood and treatable. Brain Tumour Action also funds research in partnership with fourteen other Brain Tumour Charities which comprise Brain Tumour Research.

Brian Tumour Action provides a set of ten information leaflets available free for individuals and groups on various aspects of brain tumour types and treatments. We coordinate a virtual support group and provide a telephone helpline, staffed by a trained counsellor, which is often of comfort to those most in need of someone to talk to.

Brain Tumour Action has no employees, all our work is carried out by committed volunteers.

Brain Tumour UK
E-mail: gus.ironside@braintumouruk.org.uk
www.braintumouruk.org.uk
Contact: Gus Ironside

Brain Tumour UK

Brain Tumour UK is the leading, caring charity committed to fighting brain tumours. Our personalised support is available online, on the phone, by email and through support groups. Our scientific research improves the quality of life for brain tumour patients and identifies better treatments. We raise awareness to change things for the better, for everyone affected by a brain tumour.

BrainIAC

The Brain Injury Awareness Campaign is a group of people with their own individual stories, who are all on the same mission – we want to improve things for the future because we are the ones who know. Brain injury affects 3500 people per year in Glasgow alone and we know that Brain injury doesn't discriminate – it can get you whenever, wherever and whoever you are.

Chest, Heart and Stroke Scotland
Head Office
65 North Castle Street
Edinburgh
EH2 3LT
Tel: 0131 225 6963
E-mail: admin@chss.org.uk
www.chss.org.uk
Contact: Louise Peardon

Chest, Heart and Stroke Scotland

Helpline: 0845 077 6000 or adviceline@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.

CHSS is one of Scotland's leading medical charities. Coronary heart disease is our biggest killer. Stroke is the main cause of disability in the community. Chest illnesses of various kinds are the biggest single reason for using the health service.

We fund research into all aspects of the prevention, diagnosis, treatment, rehabilitation and the social impact of chest, heart and stroke illness. Our current programme is worth more than £1m.

CHSS provides care and support throughout Scotland for people affected by these conditions, including family and other carers.

Child Brain Injury Trust
21 Saughtonhall Drive
Edinburgh
EH12 5TW
Tel: 0131 337 9523
E-mail: marydryburgh@cbituk.org
www.childbraininjurytrust.org.uk
Contact: Mary Dryburgh

Child Brain Injury Trust

The Child Brain Injury Trust provides information, support and training to anyone affected by childhood acquired brain injury. This includes the child or young person themselves, their family and the professionals who support them. This support covers the following areas:

• Direct support for families in hospital and at home
• Support for children and young people in education
• Social opportunities for children, young people and families
• Training and information for parents and carers
• Training and information for professionals
• Useful leaflets, booklets and downloadable factsheets available at www.childbraininjurytrust.org
• Small grants programme

Helpline: 0845 601 4939

The Dystonia Society
1st Floor, Camelford House
89 Albert Embankment
London
SE1 7TP
Tel: 08454 586211
E-mail: info@dystonia.org.uk
www.dystonia.org.uk
Contact: Peter Meager, 0845 803 1005

The Dystonia Society

Helpline: 0845 458 6322.

The Dystonia Society exists to promote the welfare of people who are affected by any form of the neurological movement disorder known as dystonia. The Society aims to do this by promoting awareness of the disorder, by supporting research and by undertaking welfare initiatives. It does this on a national level and through its network of local support groups.

Edinburgh M.E Self-help Group (edmesh)
Edinburgh
Tel: 08456 252025
E-mail: liz@edmesh.org.uk
www.edmesh.org.uk/
Contact: Liz Blackadder

Edinburgh M.E Self-help Group (edmesh)

EdMESH are based in Edinburgh, but have members across the Lothians and also throughout Scotland and in England. Although core activities such as open meetings, informal social get-togethers and social events/outings are based in and around Edinburgh, anyone is welcome to join regardless of where they live.

Although most members have ME, we also welcome carers, family and friends – indeed, anyone with an interest in ME or CFS. We aim to provide support, information and friendship to people affected by this illness.

Epilepsy Connections
100 Wellington Street
Glasgow
G2 6DH
Tel: 0141 248 4125
E-mail: info@epilepsyconnections.org.uk
www.epilepsyconnections.org.uk
Contact: Shirley Maxwell

Epilepsy Connections

Epilepsy Connections is a charity founded in April 2000 which provides information and support to people with epilepsy, their families, friends and those with whom they live and work.

We run a variety of projects within the Greater Glasgow & Clyde and Forth Valley Health Board areas.

Epilepsy Scotland
46 Govan Road
Glasgow
G51 1JL
Tel: 0141 427 4911
E-mail: atonberg@epilepsyscotland.org.uk
www.epilepsyscotland.org.uk
Contact: Anissa Tonberg

Epilepsy Scotland

Epilepsy Scotland provides information and services to people with epilepsy, friends and family and care professionals.

The Haven
Blantyre Health Centre
Victoria Street
Blantyre
G72 0BS
Tel: 01698 727884
E-mail: janice.williams@lanarkshire.scot.nhs.uk
www.thehavencentre.com
Contact: Janice Williams

The Haven

The Haven (Caring, Counselling, Communication Centre) provides information and support to people affected by life limiting illness such as multiple sclerosis, motor neurone disease and Parkinson's disease. Support is provided to people of all ages, including children, and to all family members and carers.

The focus of The Haven is on improving quality of life and on living positively, and all services are delivered within the framework of 'supportive self-care'. Clients are supported to develop skills and confidence to cope with the effects of illness on themselves or their loved ones, to manage stress and, where appropriate, to re-engage within their community.

Services include a specialist nurse information service, complementary therapies, counselling, children and family service, informal volunteer support, arts & crafts and 'active lifestyle' activities. Importantly, the programme of support is constantly reviewed and developed in conjunction with clients, to address their individual needs at all stages of their condition, from the point of diagnosis onwards.

The Haven operates on a drop-in basis, without the need for medical referral and all services are provided free of charge.

Headway - The Brain Injury Association
Scotland Development Office, Astley Ainslie Hospital
133 Grange Loan
Edinburgh
EH9 2HL
Tel: 0131 537 9481
www.headway.org.uk

Headway - The Brain Injury Association

Helpline: 0808 800 2244.

Contact Catriona MacGregor, East Scotland Regional Co-ordinator or Gaille McCann, West Scotland Regional Co-ordinator

Headway is a charity set up to give help and support to people affected by brain injury.

Locally: A network of local groups and branches throughout the UK and Channel Islands offers a wide range of services, including rehabilitation programmes, carer support, social re-integration, community outreach and respite care. The services available will vary, depending on local needs and resources.

Nationally: Headway UK provides support to the local groups and branches and helps to deliver high-quality services through guidance on policies, procedures, standards and training.

Headway Glasgow
C/O Renfield St Stephens Church Centre
260 Bath Street
Glasgow
G2 4JP
Tel: 0141 332 8878
E-mail: headwayglasgow@btconnect.com
www.headwayglasgow.org/
Contact: Simon Glen

Headway Glasgow

Helpline: 0808 800 2244.

Headway Glasgow is a charity set up to promote understanding of all aspects of acquired brain injury and to provide information, support and services to people with brain injury, their families and carers. We aim to provide social rehabilitation and provide a self management programme among our activities.

Headway Glasgow is affiliated to Headway the brain injury association but it is an independent charity (SC030113) run by a dedicated board with maximum service user and carer involvement.

ME Association
7 Apollo Court
Radclive Road
Gawcott, Bucks
MK18 4DF
Tel: 01280 818964
E-mail: ewandale@yahoo.co.uk
www.meassociation.org.uk
Contact: Ewan Dale, 0141 332 8115

ME Association

Helpline: 0870 444 1836 (non-members); 0870 444 1835 (members).

The ME Association provides information, support and practical advice for people who are affected by ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome) and their families and carers; funding and supporting research and providing education and training.

Meningitis Research Foundation
28 Alva Street
Edinburgh
EH2 4PY
Tel: Tel01 315102345
E-mail: info@scotland-meningitis.org.uk
www.meningitis.org
Contact: Mary Millar, Robbie Coleman

Meningitis Research Foundation

Meningitis Research Foundation's vision is a world free from meningitis and septicaemia. We fund research to prevent meningitis and septicaemia, and to improve survival rates and outcomes. The Foundation promotes education and awareness to reduce death and disability, and gives support to people affected.

We have a 24 hour Freefone helpline on 080 8800 3344 for any concerns you may have about meningitis and septicaemia. You can access further support through our foundation including our telephone befriending scheme and information about disability rights and benefits.

MND Scotland
76 Firhill Road
Glasgow
G20 7BA
Tel: 0141 945 1077
E-mail: info@mndscotland.org.uk
www.mndscotland.org.uk
Contact: Craig Stockton

MND Scotland

MND Scotland is an independent Scottish charity serving people with motor neurone disease. They provide people affected by motor neurone disease with specialist care and equipment. They offer information, counselling, and benefits advice.

The charity seeks to improve MND knowledge amongst health and social services through education, and they fund research to help find a cause and cure for motor neurone disease. This year MND Scotland will spend around £1 million raised almost entirely by supporters to fund its services.

For more information call Bryan Carroll on 0141 945 1077, mobile 07554 5211956 or e-mail bryan.carroll@mndscotland.org.uk.

Momentum Scotland
South Wing, Miquie House
23 North Silver Street
Aberdeen
AB10 1RJ
Tel: 01224 625580
E-mail: dorothy.strachan@momentumscotland.org
www.momentumscotland.org
Contact: Dorothy Strachan

Momentum Scotland

The Momentum group has more than 50 years of experience assisting disabled and excluded people throughout the country to realise their goals and achieve their potential.

We deliver a range of innovative programmes, which assist more than 2,000 people every year. Our programmes put people at the heart of what we do and support a wide range of individuals in the following areas: brain injury; mental health; employment and training; job retention; pan-disability; care and supported living and community rehabilitation.

Momentum's flexible programmes enable people to gain the skills, training and experience that they need to live independently and to achieve their goals.

MS Society Scotland
Ratho Park, 88 Glasgow Road
Ratho Station
Newbridge
EH28 8PP
Tel: 0131 335 4050
E-mail: enquiries@mssocietyscotland.org.uk
www.mssocietyscotland.org.uk
Contact: Craig Wilkie, Head of Policy and Communications

MS Society Scotland

Helpline: 0808 800 8000.

The MS Society is Scotland's largest voluntary organisation dedicated to supporting everyone whose life has been affected by MS. We depend on charitable fundraising and the support of the public and volunteers to be able to do our work.

We provide a range of services, including a free information service, publications and website, a free helpline, respite holidays at Leuchie House, local branch support, self-management training, financial support and self-catering holidays.

Muscular Dystrophy Campaign
7-11 Prescott Place
London
SW4 6BS
Tel: 020 7720 8055
E-mail: info@muscular-dystrophy.org
www.muscular-dystrophy.org

Muscular Dystrophy Campaign

Pain Concern
Unit 1 -3
62 - 66 Newcraighall Road, Fort Kinnaird
Edinburgh
EH15 3HS
Tel: 0131 669 5951
E-mail: info@painconcern.org.uk
www.painconcern.org.uk
Contact: Breck MacGregor

Pain Concern

Free Helpline: 0300 123 0789

Pain Concern provides information and support for people who live with pain and those who care for and about them. We offer a Listening-ear Helpline and free leaflets to help you manage your pain (Send three second class stamps for our information pack).

Our magazine 'Pain Matters' brings you the best of self-help - how to cope with pain, how well our pain services are working, updates on the latest research and developments, 'Get in Touch' column, and 'Readers' Forum' for your news and views.

Pain Concern also campaigns on pain – we support the Scottish Parliament's Cross Party Group on Chronic Pain, the Pain Policy Forum at Westminster, and the International Association for the Study of Pain (IASP) 'Global Year Against Pain'.

Added to our list of resources is a new internet radio programme which covers various topics on chronic pain. The programmes remain as podcasts on the broadcaster's website (Ableradio.com) as an accessible support system. We are now about to broadcast programme 10. Recently we won Scottish lottery funding to produce programmes focusing on Scottish pain services.

Parkinson's UK
Forsyth House, Lomond Court
Castle Business Park
Stirling
FK9 4TU
Tel: 01786 431732
E-mail: scotland@parkinsons.org.uk
www.parkinsons.org.uk
Contact: Tanith Muller, Campaigns Officer

Parkinson's UK

Because we’re here, no one has to face Parkinson’s alone.

We bring people with Parkinson’s, their carers and families together via our network of local groups, our website and free confidential helpline. Specialist nurses, our supporters and staff provide information and training on every aspect of Parkinson’s.

As the UK’s Parkinson’s support and research charity we’re leading the work to find a cure, and we’re closer than ever. We also campaign to change attitudes and demand better services.

Our work is totally dependent on donations. Help us to find a cure and improve life for everyone affected by Parkinson’s.

We have a dedicated staff team in Scotland, and local groups across the country supporting people affected by Parkinson’s.

Free* confidential helpline 0808 800 0303
Monday to Friday 9am–8pm
Saturday 10am–2pm. Interpreting available.
Text relay 18001 0808 800 0303
*Calls are free from UK landlines and most mobile networks.

Progressive Supranuclear Palsy (PSP Europe) Association
PSP House, 167 Watling Street
Towcester
NN12 6BX
Tel: 01327 322410
E-mail: psp@pspeur.org
www.pspeur.org
Contact: Katie Rigg

Progressive Supranuclear Palsy (PSP Europe) Association

The PSP Association supports people with PSP and the closely related condition Cortico Basal Degeneration (CBD) across Scotland.

We provide a comprehensive carer's information pack, local care and support groups in Edinburgh, Glasgow, Aberdeen, Perth and Dumfries. The PSP Association has a website with a discussion forum and also offers information and teaching sessions to health professionals.

A telephone helpline is available to our PSP/CBD Nurse Specialist, Katie Rigg - 01434 382564.

Revive MS Support
MS Therapy Centre, 16 Chapel Street Estate
Maryhill
Glasgow
G20 9BD
Tel: 0141 945 3344
E-mail: info@revivemssupport.org.uk
www.revivemssupport.org.uk
Contact: James Dornan

Revive MS Support

Revive MS Support is dedicated to helping people with Multiple Sclerosis, their family and carers lead the most fulfilling lives possible. Reaching out to people affected by MS throughout West and Central Scotland, a team of MS professionals offer a comprehensive range of therapies and other specialist services, together with support and advice from a welcoming MS Centre in Glasgow and outreach clinics elsewhere.

Scottish Epilepsy Centre, Quarriers
Quarriers Upper Village
Bridge of Weir
PA11 3SD
Tel: 01505 616066
E-mail: Scottishepilepsycentre@quarriers.org.uk
www.scottishepilepsycentre.org.uk/
Contact: Gerard Gahagan

Scottish Epilepsy Centre, Quarriers

The Scottish Epilepsy Centre provides the only residential assessment and treatment centre in Scotland for adults with epilepsy.

We are an Independent Hospital operated by Quarriers Charity providing services to patients and clinicians across Scotland. Our 10 bedded in-patient facility provides flexible, patient-centred residential assessment for adults 16 years and over.

We offer multidisciplinary in-patient assessment to people with complex diagnostic and treatment needs. The Scottish Epilepsy Centre provides inpatient clinical review, diagnostic assessment such as EEG, ambulatory EEG and videotelemetry, the ability to initiate or withdraw medications in a safe monitored environment, outpatient and telemedicine clinics. Our team includes consultant neurologists, a consultant neurophysiologist, an epilepsy nurse specialist, a clinical neuropsychologist, clinical physiologists and experienced nursing staff.

Scottish Head Injury Forum
C/O Centre for Brain Injury Rehabilitation
Royal Victoria Hospital, Jedburgh Road
Dundee
DD2 1SP
Tel: 01382 423196
E-mail: admin@shif.org.uk
www.shif.org.uk
Contact: Neliss Baxter

Scottish Head Injury Forum

SHIF is a registered Scottish Charity, founded in 1993. It is a national umbrella organisation representing the interests of survivors of brain injuries, their families, and those who work with them.

SHIF works to increase knowledge of the effects of acquired brain injury amongst service users and their families, healthcare and social work service providers and policy makers.

Scottish Huntington's Association
St James Business Centre
Suite 135, Linwood Rd
Paisley
PA3 3AT
Tel: 0141 848 0308
E-mail: john.eden@hdscotland.org
www.hdscotland.org
Contact: John Eden

Scottish Huntington's Association

The Scottish Huntington's Association (SHA) is a small Scottish Charity established by families living with Huntington's disease in the late 1980s.

Experiencing directly the dearth of services available to them, the organisation pursued the goal of setting up specialist family support services and this ultimately blossomed into the development of an extensive network of specialist services.

Scottish Spina Bifida Association
The Dan Young Building
6 Craighalbert Way
Cumbernauld
G68 0LS
Tel: 01236 794500
E-mail: mail@ssba.org.uk
www.ssba.org.uk
Contact: Andrew HD Wynd, 01236 794500

Scottish Spina Bifida Association

Helpline: 08459 11 11 12.

The SSBA is Scotland's voice for spina bifida, hydrocephalus and related conditions.

The SSBA seeks to increase public awareness and understanding of individuals with spina bifida and/or Hydrocephalus and allied disorders. It aims to support all those affected to identify their needs and to empower them to make informed choices and decisions.

Scottish Stem Cell Network
Wallace Building
Roslin Biocentre
Roslin
EH25 9PP
E-mail: kevin.price@sscn.co.uk
www.sscn.co.uk
Contact: Kevin Price

Scottish Stem Cell Network

The Scottish Stem Cell Network (SSCN) was launched in 2003 with support from Scottish Enterprise Edinburgh and Lothian. SSCN is currently funded by Scottish Enterprise Edinburgh and Lothian, along with the European Regional Development Fund, the Technology Strategy Board and generous support from our corporate sponsors. Since its launch, the Network has grown from strength to strength and currently boasts over 1000 members.

The aim of the Network is to bring together scientists and clinicians in order to improve the rate at which laboratory research translates into therapeutic benefits for patients. We work with the entire stem cell community in Scotland, including academic institutions, clinical and industry-based research groups, as well as charities and suppliers. We provide a forum for discussion, learning and collaboration, which is critical for the development of this exciting new technology

Spinal Injuries Scotland
Festival Business Centre
150 Brand Street
Glasgow
G51 1DH
Tel: 0141 427 7678
E-mail: info@sisonline.org
www.sisonline.org
Contact: Liz Anderson, 0141 427 7686

Spinal Injuries Scotland

Spinal Injuries Scotland is the national voluntary organisation concerned with new and long-term spinal cord injured people, their relatives and friends, along with those involved in the management, care and rehabilitation of the injury. Our aim is to provide information, advice, support and education.

SIS provides immediate support through the office based Information Service and our Area Representative Network who contact all those who request assistance. SIS has a Legal and Welfare Rights Advisory service and also run a self-referral support line. Our representatives, who are able to discuss all aspects of living with a spinal cord injury, undertake weekly visits to the Queen Elizabeth National Spinal Injuries Unit.

The Stroke Association
Links House
15 Links Place
Edinburgh
EH6 7EZ
Tel: 0131 555 7240
E-mail: scotland@stroke.org.uk
www.stroke.org.uk
Contact: Maddy Halliday, 0131 555 7244

The Stroke Association

Helpline: 0845 303 3100.

The Stroke Association is the only UK charity solely concerned with combating stroke in people of all ages. The charity funds research into prevention, treatment, better methods of rehabilitation and helps stroke patients and their families directly through its services which include information services, welfare grants, publications and leaflets. The Stroke Association also campaigns, educates and informs to increase knowledge of stroke at all levels of society acting as a voice for everyone affected by stroke.

Sue Ryder Care
2nd Floor
114-118 Southampton Row
London
WC1B 5AA
Tel: 020 7400 0440
www.suerydercare.org
Contact: Pamela MacKenzie

Sue Ryder Care

Sue Ryder Care supports people with specialist palliative, end of life and long-term neurological care needs. Each year we provide four million hours of care to people living with cancer, multiple sclerosis, Huntington's disease, Parkinson's disease, motor neurone disease, stroke and brain injury.

Tourette Scotland
Inveralmond Business Centre
Auld Bond Road
Perth
PH1 3FX
Tel: 01738 646742
E-mail: ruth@tourettescotland.org
www.tourettescotland.org
Contact: Ruth Smith

Tourette Scotland

Tourette Scotland provides services such as newsletters, training fact-sheets and information packs for professtionals. Events include monthly area support meetings, Spring and Autumn Meetings where members meet to share their experiences. We raise awareness through our training sessions, seminars and research.

Tourette Syndrome is very misunderstood, being projected as a 'swearing disease' even though only 1 in 5 develop this particular tic, and it is a small part of the overall condition. Those who live with this condition day by day suffer prejudice and isolation.

We receive no statutory funding and rely on funding through grants, donations and fundraising. Any donations can be directed via our website using the link to JustGiving, or by post to our office in Perth.

Our helpline telephone number is 0300 11 11 462

The Towpath Trust
PO Box 26298
Hamilton
ML3 3AP
Tel: 07899 808883
E-mail: info@towpathtrust.org.uk
www.towpathtrust.org.uk
Contact: Professor Ian Bone, 01436 671472

The Towpath Trust

We are an umbrella organisation that supports neurological charities and organisations. We support charities based in the Chapel Street Estate, Maryhill, Glasgow and run a transport project and educational project which is rolled out to other organisations.

We are currently involved with Glasgow City Council in trying to establish a neuro-charity centre.

The Transverse Myelitis Scotland Support Group
26 Lichtenfels Gardens
Prestwick
KA9 1EP
Tel: 01292 476758
E-mail: margaretshearer@myelitis.org
www.myelitis.org.uk/scotland

The Transverse Myelitis Scotland Support Group

The group is affiliated with the worldwide organisation The Transverse Myelitis Association (TMA). Established in 2003, we have over 70 members in Scotland and meet bimonthly in the Southern General Hospital. Dates of our meetings are posted on our website.