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A-Z of Patient Support Groups

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A – Z List of Patient Support Services


ACT (Association for Children’s Palliative Care)
Action against Medical Accidents
Action for Blind People
Action for ME
Action for Sick Children
Action for Victims of Medical Accidents
– An independent charity working for the victims of medical accidents
Action on Elder Abuse
Action on Pre-Eclampsia (APEC)
Action on Smoking and Health (ASH)
Addison’s Disease Self-Help Group
Adult Dyslexia Organisation
AFASIC – Children with Speech, Language and Communication Impairments)
African Caribbean Leukaemia Trust
African Health for Empowerment and Development
Age Concern
Aid for Children with Tracheostomies (ACT)
AIS Support Group (androgen insensitivity syndrome)
Al-Anon Family Groups
Albinism Fellowship
Alcohol Concern
Alcoholics Anonymous (UK)
Allergy UK
Allergy-Induced Autism (AIA)
Alopecia UK
Alstrom Syndrome UK
Alzheimer’s Society
Anaphylaxis Campaign
Andrea Adams Trust
Aniridia Network
Anorchidism Support Group
Anorexia and Bulimia Care
Antenatal Results and Choices (ARC)
Anthony Nolan Trust (Bone Marrow)
Anxiety UK
Aplastic Anaemia Trust
Arthritic Association
Arthritis and Musculoskeletal Alliance
Arthritis Care (UK)
Arthritis Research Campaign (ARC)
Arthrogryposis Group
Asbestos Diseases UK
Asian Family Counselling Service
ASSERT (Angelman Syndrome)
Assist UK
Association for Glycogen Storage Disease (UK) GSD Type II, Pompe Disease
Association for Glycogen Storage Diseases (UK)
Association for Post Natal Illness
Association of Children’s Hospices
Association of Reflexologists
Association of Young People with ME
Asthma UK
Ataxia UK Attention Deficit Disorder Information and Support Service (UK)
Autism Independent UK

BANA (British Acoustic Neuroma Association)
BASIC (Brain and Spinal Injury Charity)
Basingstoke Bowel Cancer Research Unit
Batten Disease Family Association


Battle Against Tranquillisers (BAT)
BDF Newlife

Beating Bowel Cancer
Beating Eating Disorders
Behçet’s Syndrome Society Benefits Enquiry Line
Betterhearing Advice Line
BHF National Centre for Physical Activity and Health (BHFNC)
bibic (British Institute for Brain Injured Children)
BIRD (Neuro Developmental Treatment Charity)
Birthmark Support Group
BLESMA (British Limbless Ex-Servicemen’s Association)
BLISS (National Charity for the Newborn)
Blood Pressure Association
Bowel Cancer UK
BPD World (Borderline Personality Disorders)
Brain and Spine Foundation
Brain Help
Brain Injury Centre
Brain Injury Rehabilitation Trust
Brain Tumour UK
Brainwave Centre Ltd Therapy for Brain Injured Children
Breakthrough Breast Cancer
Breast Cancer Care
Breastfeeding Network
British Association for Adoption and Fostering (BAAF)
British Association for Counselling and Psychotherapy (BACP)
British Association of Anger Management
British Association of Skin Camouflage
British Cardiac Patients Association (UK)
British Deaf Association
British Dental Health Foundation
British Dyslexia Association
British Heart Foundation (UK)
British Homeopathic Association
British Infertility Counselling Association (BICA)
British Institute of Learning Disabilities (BILD)
British Kidney Patient Association
British Liver Trust
British Lung Foundation
British Pregnancy Advisory Service (BPAS)(UK)
British Red Cross
British Retinitis Pigmentosa Society
British Sjogren’s Syndrome Association
British Skin Foundation
British Snoring & Sleep Apnoea Association
British Stammering Association
British Thyroid Foundation
British Tinnitus Association (UK)
Brittle Bone Society
Brook Central – Free confidential sex and contraception advice to young people
Bullying UK



Caraline (Eating Disorders Counselling and Support Service)
Cardiomyopathy Association

Carers UK
Carr Gomm – Carr-Gomm is a national charity providing high quality support and housing services that place individuals at the centre of planning and decision making, enabling them to have control over their lives
Centrepoint – ”
Centrepoint is the national charity working to improve the lives of socially excluded, homeless young people. It provides a range of accommodation based services, including emergency nightshelters and short stay hostels, specialist projects for care leavers, ex-offenders, young single parents, foyers and supported flats and floating support services”
Cerebra – for Brain Injured Children and Young People
Changing Faces – A national charity that supports and represents people who have disfigurements of the face or body from any cause
Child Brain Injury Trust (CBIT)
Child Growth Foundation – Provides support and encouragement to all persons who have growth disorders.
Childhood Eye Cancer Trust
Children Living with Inherited Metabolic Diseases (CLIMB)
Children’s Chronic Arthritis Association
Children’s Heart Federation
Children’s Liver Disease Foundation
Children’s Society (UK)
Child-to-Child Trust
Circulation Foundation (formerly British Vascular Foundation)
CITAP (Council for Infotmation on Tranquillisers Antidepressants and Painkillers)
Citizens Advice Bureau (UK)
CJD Support Network
Cleft Lip & Palate Association (CLAPA)
CLIC Sargent (Cancer Care for Children)

CMT United Kingdom (Charcot Marie Tooth)
Coeliac UK
Colostomy Association
Compassionate Friends – The Compassionate Friends (TCF) is an organisation of bereaved parents and their families offering understanding, support and encouragement to others after the death of a child or children
Congenital Melanocytic Naevus Support Group
Connexions Direct – Advice service for young people aged 13-19, living in England. It also provides support up to the age of 25 for young people who have learning difficulties or disabilities (or both)
Contact a Family
Contact the Elderly
Contraceptive Education Service
CORE (was Digestive Disorders Foundation)
Cornelia de Lange Syndrome Foundation
Counsel and Care
Cragside Consultants Limited & Cragside AccessABILITY Limited
Provides Braille translation/transcription services
Cri-du-Chat Syndrome Support Group
Crohn’s in Childhood Research Association (CICRA)
CRUSE Bereavement Care (UK)
Cued Speech Association UK

Cyber bullying and Substance Abuse
Cystinosis Foundation UK
Cystitis and Overactive Bladder Foundation


DABS Pathfinder Service


support to anyone in UK regarding issues to do with child abuse, incest and rape
DANDA Developmental Adult Neuro-Diversity Association
Deaf Plus
Deafblind UK
DEBRA – National charity working on behalf of people in the UK with the genetic skin blistering condition Epidermolysis Bullosa (EB).
DELTA (Deaf Education Through Listening & Talking)
Depression Alliance
Diabetes UK

Diabetes Bedford
Dial UK (Disability Information and Advice Line)
Disability, Pregnancy & Parenthood International
Disabled Living Foundation
Disabled Parents Network (UK)
Down’s Heart Group
Down’s Syndrome Association
Duchenne Family Support Group
Dyspraxia Foundation
Dystonia Society


Eating Disorders Research Unit
Ectodermal Dysplasia Society
Ectopic Pregnancy Trust
Ehlers Danlos Support Group
Ekbom Syndrome Association (Restless Leg Syndrome)
Elderly Accommodation Counsel
ElectroSensitivity UK
Encephalitis Society
Endometriosis SHE Trust (UK)
Endometriosis UK
Epilepsy Action (UK)
Epilepsy Bereaved
Epilepsy Research UK
ERBs Palsy Group
ERIC – Education and Resources for Improving Childhood Continence
Eyecare Trust



Families Anonymous – Provides support to the family and friends of drug users
Family Rights Group
Provides confidential advice and support to families who

se children require

social care

Family Welfare Association
Fatherhood Institute
Fertility UK
Fibromyalgia Association UK
Foundation for People with Learning Disabilities
Fragile X Foundation
Friends of Landau Kleffner Syndrome
FSID (Foundation for the Study of Infant Deaths)


Galactosaemia Support Group
Gamblers Anonymous
GamCare – Provides support, information and advice for anyone suffering through a gambling problem
Gastroschisis Exompholos Extrophies Parents Support Network (GEEPS) – GEEPS is an international network of families and friends of children born with abdominal abnormalities
Gauchers Association
Gender Trust – Supports people who are affected by Gender Dysphonia
Genetic Interest Group – The Genetic Interest Group (GIG) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders
Get Connected – Provides support and help to young people
Gingerbread – Provides support for one parent families
Gorlin Syndrome Group
Group B Strep Support
Grown Up Congenital Heart Patient’s Association – Supports young adults with congenital heart disease
Guillain Barre Syndrome Support Group


Haemochromatosis Society
Haemophilia Society
Hairline International – The Alopecia Patients’ Society
Headlines – Craniofacial Support
Headway – Supports people with brain injury
Healthy Start – “With Healthy Start, you can get free vouchers every week which you swap for milk, fresh fruit, fresh vegetables and infant formula milk. You can also get free vitamins. Healthy Start replaces the Welfare Food Scheme”
Hearing Concern Link – Provides support and information for people with hearing loss
Hearing Dogs for Deaf People
Hearing Voices Network
Heart to Hearts – Provides support for heart surgery patients
Heartline – “A voluntary organisation set up to offer help and support to children with heart disorders and their families regardless of how slight or severe the condition may be”
HEARTUK – The Cholesterol Charity
Heather Preen Trust (Haemolytic Uraemic Syndrome (HUS) & E.coli poisoning)
Help The Aged
HemiHelp – Provides support for Children and Young People with Hemiplegia
Henshaws Society for Blind People
Hepatitis B Foundation
Hepatitis C Resource Centre
Herpes Viruses Association
High Blood Pressure Foundation
HITS (UK) – A family support network for sufferers of HI
Hope UK

HOPE Course for Cancer Survivors
Hospice Information
Hughes Syndrome Foundation
Huntington’s Disease Association (UK)
Hyperactive Children’s Support Group
Hysterectomy Association



IA (The Ileostomy and Internal Pouch Support Group)
Ichthyosis Support Group (ISG)
Idiopathic Thrombocytopenic Purpura Support Association
Immigration Advisory Service

The Immigration Advisory Service (IAS) is the

UK ’s largest charity providing representation and advice in immigration and asylum law. These services are free to people who are eligible
Incontact – Provides information and support to people with bladder and bowel problems
Independent Panel for Special Education Advice (IPSEA)
Infertility Network UK
Inspirability UK – supporting those with long term conditions and impairments
Insulin Dependent Diabetes Trust
International Glaucoma Association

Internet safety for women



JABS (Justice Awareness Basic Support) – Support group for vaccine damaged children
Jennifer Trust for Spinal Muscular Atrophy
Joint Epilepsy Council
Juvenile Diabetes Research Foundation (UK)


Kemsley, National Centre for Brain Injury Rehabilitation
Keratoconus Self Help and Support Group
Klinefelter Organisation



La Leche League GB – Mother-to-Mother breastfeeding support
LAM Action – Support for women suffering from lymphangioleiomyomatosis
Latex Allergy Support Group
Learning Assessment and Neurocare Centre
Let’s Face It – Support for people with facial disfigurement
Leukaemia CARE
Lifeblood: The Thrombosis Charity
Lung and Asthma Information Agency
Lupus UK
Lymphoma Association



Macmillan Cancer Support
MACS – Support and information about Microanophthalmia, Anophthalmia, Coloboma and related conditions
MAMA (Meet-a-Mum Association)
Mankind UK – National UK charitable organisation providing support for men who have been sexually abused, sexually assaulted and/or raped
Marfan Association UK
Marie Curie Cancer Care (UK) – Marie Curie is there for people living with any terminal illnesses and their families. Marie Curie offers expert care, guidance and support to help get the most out of what time is left
Marie Stopes International – Provides information on contraception
MaxAppeal – Supports families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion
MDF- The Bipolar Organisation
ME Association
Medical Advisory Service for Travellers Abroad (MASTA)
Medical Foundation for the Care of Victims of Torture – Provides care and rehabilitation to survivors of torture and other forms of organised violence
MedicAlert Foundation – MedicAlert® is the only non-profit making, registered charity providing a life-saving identification system for individuals with hidden medical conditions and allergies
Meniere’s Society
Meningitis Research Foundation
Meningitis Trust
Mental Health Foundation
Mental Health Matters
Mesothelioma UK

Migraine Action Association
Migraine Trust
Miscarriage Association
Mobility Information Service
Mosaic Down Syndrome Unique Kids
Motor Neurone Disease Association
MS Trust
Multiple Sclerosis Resource Centre
Multiple Sclerosis Society
Multiple System Atrophy (Sarah Matheson Trust)
Muscular Dystrophy Campaign
Myasthenia Gravis Association
Myeloma UK
Myositis Support Group
Myotonic Dystrophy Support Group


Nail Patella Syndrome (NPS) UK
Narcotics Anonymous
National Ankylosing Spondylitis Society
National Artificial Eye Service
National Association for Children of Alcoholics
National Association for Colitis and Crohn’s Disease
National Association for People Abused in Childhood (NAPAC)
National Association for Relief of Pagets Disease
National Blind Children’s Society
National Candida Society
National Centre for Eating Disorders
National Centre for Young People with Epilepsy – The NCYPE
National Childbirth Trust
National Deaf Children’s Society (UK)
National Eczema Society
National Family Mediation
National Kidney Federation

National Lichen Sclerosus Support Group
National ME Centre
National Obesity Forum
National Osteoporosis Society (UK)
National Phobics Society
National Rheumatoid Arthritis Society
National Society for Epilepsy
National Society for Phenylketonuria (PKU)
National Tremor Foundation
Neurofibromatosis Association
NHS Smoking Helpline
No Panic – Support for sufferers of Panic Attacks, Phobias, Obsessive Compulsive Disorder,General Anxiety Disorder and Tranquilliser Withdrawal
NSPCC (National Society for the Prevention of Cruelty to Children)

Nystagmus Network



Oesophageal Patients’ Association
Orchid Cancer Appeal – “Orchid exists to save men’s lives from testicular, prostate and penile cancers through pioneering research and promoting awareness”
Organ Donation Information line
Organisation of Blind African Caribbeans (OBAC)
Osteopathic Information Service
Osteopetrosis Support Trust
Ovacome (Ovarian Cancer)


Pain Concern
Pain Support
Pancreatic Cancer UK
Pancreatitis Supporters Network
Parentline Plus
Parkinson’s Disease Society (UK)
Patients Association
Peach – Parents for the Early Intervention of Autism in Children
Pelvic Pain Support Network
Perinatal Illness – UK
Perthes Association
Pick’s Disease Support Group
Pituitary Foundation
Polycystic Kidney Disease Charity
Polycystic Ovaries Self Help Group – Verity
Positively Women – Positively Women is the only national charity providing support
for women living with HIV
by women living with HIV
Prader-Willi Syndrome Association
Primary Ciliary Dyskinesia Family Support Group (PCD)
Primary Immunodeficiency Association
Primary Sclerosing Cholangitis (PSC) Support
Prostate Cancer Support Association (PSA)
Protein S Deficiency and Thrombophilia
Proteus Syndrome Foundation
Psoriasis and Psoriatic Arthritis Alliance (PAPAA)
Psoriasis Association



QUIT is the independent charity whose aim is to save lives by helping smokers to stop



Rape and Sexual Abuse Support Centre
Rape Crisis (England & Wales) – Provides the basic information that survivors of sexual violence, friends and family need to access the services they need
Rarer Cancers Forum – “Offers advice and information to individuals with rare and less common cancers or to their families and friends, providing a ‘bespoke’ service by phone/email/post”
Raynaud’s and Scleroderma Association
REACH (Association for children with hand or arm deficiency)
Refugee Action – “Refugee Action is an independent national charity that works with refugees to build new lives in the UK”
Refugee Council (UK)
Relate – Offers advice, relationship counselling, sex therapy, workshops, mediation, consultations and support
Relatives and Residents Association – “The Relatives & Residents Association exists for older people needing, or living in, residential care and the families and friends left behind”
Repetitive Strain Injury Awareness
Re-Solv – “Dedicated to the prevention of solvent and volatile substance abuse”
Restricted Growth Association
Rett Syndrome Association
RNID for deaf and hard of hearing people
Roy Castle Lung Cancer Foundation
Royal National College for the Blind (RNC) – College of further education and training for people (16+) who are blind or partially sighted
Royal National Institute for Blind People
Rural Stress Helpline



Samantha Dickson Brain Tumour Trust – “Samantha Dickson Brain Tumour Trust exists to find a cure for childhood and adult brain tumours through funding research and to offer support, hope and information to patients and their carers”
SANE – SANE was established in 1986 to improve the quality of life for people affected by mental illness
Sarcoidosis & Interstitial Lung Association (SILA) (UK)
Sarcoma UK
Scleroderma Society
Scoliosis Association UK
Seasonal Affective Disorder Association
Sense (National Deaf, Blind and Rubella Association)
Shingles Support Society
Sibs – Supports siblings who are growing up with or who have grown up with a brother or sister with any disability, long term chronic illness, or life limiting condition
Sickle Cell Society
Sleep Apnoea Trust Association
Society for Mucopolysaccharide Disease (MPS Society)
Speakablity (Action for Dysphasic Adults)
Spinal Injuries Association
Stickler Syndrome Support Group
Stillbirth & Neonatal Death Society (SANDS)
Stress, Anxiety and Depression Confidential Helpline
Stroke Association
Stuart Strange Vasculitis Trust (Wegener’s Granulomatosis)

Sturge-Weber Foundation
Sudden Trauma Information Service Helpline (STISH)
Survivors of Bereavement by Suicide
Suzy Lamplugh Trust
Syndromes Without A Name (SWAN)



Telangiectasia Self-Help Group
Terrence Higgins Trust
Thalidomide Society
The Ann Conroy Trust – the Syringomyelia/Chiari Society
The Gut Trust (formerly IBS Network)
The Macular Disease Society
The National Autistic Society
The Neurological Alliance
The Princess Royal Trust for Carers
The Prostate Cancer Charity
Thrombocytopenia and Absent Radii (TAR) Syndrome Support Group
Thyroid UK

Together (was Mental Health After Care Association (MACA))
Tommy’s, the baby charity
Tourette Syndrome(UK)Association
Toxic Shock Syndrome Information Service
Tracheo Oesophageal Fistula Support (TOFS)
Transplant Support Network
Trigeminal Neuralgia Association (UK)
Tuberous Sclerosis Association
Turner Syndrome Support Society
Turning Point
Twins and Multiple Birth Association



UK Gout Society
Unique (Rare Chromosome Disorder Support Group)
United Kingdom Acquired Brain Injury Forum
Uveitis Information Group



Vitalise – National charity providing short breaks (respite care) and other services for disabled people, visually impaired people, and carers
Vitiligo Society
Von Hippel Lindau (VHL) Contact Group



WheelPower – National charity for wheelchair sport
Whizz Kidz – Provides customised mobility equipment to disabled children and young people
Wolf Hirschhorn Syndrome Trust
Women’s Health Concern
Worster-Drought Syndrome Support Group
WRVS (Women’s Royal Voluntary Service)



XP (xeroderma pigmentosum) Support Group



Young Minds (Children’s mental health)