NHS – Allergies
http://www.nhs.uk/conditions/allergies/pages/introduction.aspx(opens in a new window)
Information on symptoms, causes and treatment of allergies.
http://www.anaphylaxis.org.uk/ (opens in a new window)
Information and support for anyone living with severe allergies.
https://www.allergyuk.org/ (opens in a new window)
Supporting those with allergy and intolerance.
Advice and support for anyone affected by Asthma.
Helpline: 0300 222 5800 (Monday –Friday 9am – 5pm)
Versus Arthritis offer support advice to anyone living with arthritis.
Helpline: 0800 5200 520 (lines open Monday – Friday 9am - 8pm)
http://www.arthritiscare.org.uk/Home (opens in a new window)
Arthritis Care offer support advice to anyone living with arthritis.
Helpline: 0808 800 4050 (lines open Monday – Friday 9.30am - 5pm)
CONGENITAL & GENETIC CONDITIONS
Contact a Family
http://www.cafamily.org.uk (opens in a new window)
Contact a Family give information and support for all conditions affecting children. A directory of specific conditions and rare disorders can be found online.
Helpline: 0808 808 3555 (lines open Monday – Friday 9.30am - 5pm)
https://www.wellchild.org.uk/ (opens in a new window)
Support for families caring for a seriously ill child or young person.
BSS – Bernard-Soulier Syndrome
Bernard-Soulier syndrome is a rare inherited disorder of blood clotting characterised by unusually large platelets, low platelet count and prolonged bleeding time. Affected individuals tend to bleed excessively and bruise easily. For information on blood disorders go to http://haemophilia.org.uk/
Klinefelter’s Syndrome Association
Support and information for those affected by Klinefelter’s Syndrome (KS or XXY). An under diagnosed congenital condition caused by an additional chromosome.
http://www.lagans.org.uk/ (opens in a new window)
Supporting parents at home, and in hospital, with babies and children under 5 who are diagnosed with Heart Defects (CHD) or feeding difficulties.
Unique - The Rare Chromosome Disorder Support Group
http://www.rarechromo.org (opens in a new window)
Unique provide support and information to families of children with rare chromosome disorders, and professionals. Downloadable leaflets are available online for individual chromosome disorders.
http://www.achondroplasia.co.uk (opens in a new window)
Information and support groups for families of a child with achondroplasia.
aHAS – atypical Haemolytic Uraemic Syndrome
http://ahusuk.org/ (opens in a new window)
Patient and family support for atypical Haemolytic Uraemic Syndrome.
Bubble Foundation UK
http://www.bubblefoundation.org.uk/ (opens in a new window)
Support for families of children born with Severe Combined Immune Deficiency Syndrome (SCID) or other conditions requiring bone marrow transplants.
Brittle Bone Society
http://www.brittlebone.org/ (opens in a new window)
Membership organisation providing support to people affected by the bone condition Osteogenesis Imperfecta (OI).
Cerebral Palsy – SCOPE
http://www.scope.org.uk/support/families/diagnosis/cerebral-palsy (opens in a new window)
Information about Cerebral Palsy from SCOPE.
CLAPA - The Cleft Lip and Palate Association
http://www.clapa.com (opens in a new window)
CLAPA offer information and answers to some of the most commonly asked questions about cleft lip and palate.
http://www.nhs.uk/conditions/Dyspraxia-in-adults/Pages/Introduction.aspx (opens in a new window)
NHS information on Dyspraxia, a common disorder that affects movement and coordination.
http://www.dyspraxiafoundation.org.uk/ (opens in a new window)
Information on sources of local support, features a range of leaflets and books
Helpline: 01462 454 986 (lines open Monday – Friday 9am – 1pm)
Down’s syndrome Association
http://www.downs-syndrome.org.uk (opens in a new window)
Information and support across all aspects of living with Down’s syndrome.
Information: 0333 1212 300 (lines open Monday – Friday 10am – 4pm)
Information and support for those living with Marfan syndrome.
Mosaic Down’s Syndrome
Information on all forms of Down’s Syndrome including Mosaic.
NHS information on the group of inherited genetic conditions called MD – Muscular Dystrophy.
Muscular Dystrophy UK
Information and support for those affected by a muscle wasting condition. Helpline: 0800 652 6352 (Monday – Friday 8.30am – 6pm)
The Neuro Foundation
http://www.nfauk.org/ (opens in a new window)
The Neuro Foundation offer support advice to anyone with Neurofibromatosis, downloadable leaflets are available online.
Pfeiffer’s Syndrome - Headlines
http://www.headlines.org.uk/ (opens in a new window)
The UK craniofacial support group
Sickle Cell Disease
http://sicklecellsociety.org/ (opens in a new window)
Support and information for Sickle Cell Disease.
http://www.sauk.org.uk/ (opens in a new window)
Providing support and advice for anyone affected by scoliosis.
Helpline: 0208 964 1166 (lines open Monday – Friday 9.30am – 5.30pm)
The Arthrogryposis Group - TAG
TAG is a support group for anyone who has the condition Arthrogryposis Multiplex Congenita.
http://www.tourettes-action.org.uk/ (opens in a new window)
Information and support for anyone affected by Tourette Syndrome.
Helpline: 0300 777 8427 (lines open Monday & Thursday 9am - 1pm, 6 -8pm)
Tourette Syndrome Information.
Great Ormond Street Hospital series of information packs on TS for families, young people and teachers.
Tuberous Sclerosis Association – TSA
http://www.tuberous-sclerosis.org/ (opens in a new window)
TCA support for anyone affected by TSC as well as their families and carers.
The Restricted Growth Association
http://www.restrictedgrowth.co.uk/ (opens in a new window)
Supporting families of children diagnosed with achondroplasia or restricted growth.
Helpline: 0300 111 1970 (Monday - Friday 9am-5pm, leave message and you will be called back)
Shine - Spina Bifida & Hydrocephalus
http://www.shinecharity.org.uk/ (opens in a new window)
Offering supporting to individuals and families who are coping with Spina Bifida and Hydrocephalus.
Information and support for Usher Syndrome from Sense.
Information line: 0300 330 9256 (Monday – Friday 9am – 5pm) Textphone: 0300 330 9256 (Monday – Friday 9am – 5pm)
Sign Language interpreter available online. (Monday – Friday 9am – 5pm)
Williams Syndrome Foundation
Providing support advice for this rare disorder.
NHS information on Zika virus disease and it’s possible effects, particularly for pregnant women.
http://www.diabetes.org.uk/ (opens in a new window)
Diabetes UK offers support and advice to anyone with diabetes.
Careline: 0345 123 2399 (lines open Monday to Friday 9am-6pm)
Children With Diabetes
http://www.childrenwithdiabetes.com/uk/ (opens in a new window)
Support and information for families of children with diabetes.
Juvenile Diabetes Research Foundation
(opens in a new window)Offering leaflets, magazine and packs for young people affected by Type 1 diabetes.
http://www.diabetes.co.uk/diabetes-complications/diabetes-complications.html (opens in a new window)
A guide to complications that can occur from diabetes.
http://www.epilepsy.org.uk (opens in a new window)
Advice, support and information on all aspects of living with epilepsy.
Helpline: 0808 800 5050 (lines open Monday – Friday 8.30am – 5.30pm)
Text: 07537410044 (reply within 24 hours on working days)
http://youngepilepsy.org.uk/ (opens in a new window)
Advice information for young people with epilepsy.
Helpline: 01342 831342 (lines open Monday – Friday 9am – 1pm)
Female Health Issues
http://www.femalehealthissues.co.uk/ (opens in a new window)
Information and advice on women’s health issues.
NHS - Sexual Dysfunction
http://www.nhs.uk/Livewell/Goodsex/Pages/Malesexualdysfunction.aspx(opens in a new window)
NHS information on sexual issues, including erectile dysfunction causes and treatments.
http://www.nhs.uk/Conditions/contraception-guide/Pages/vasectomy-male-sterilisation.aspx (opens in a new window)
NHS information on vasectomy.
HEAD & BRAIN INJURY with STROKE & APHASIA
http://www.stroke.org.uk (opens in a new window)
The Stoke Association support anyone affected by stroke and provide advice on preventing further strokes.
Helpline: 0303 3033 100 (lines open Monday, Thursday, Friday 9am - 5pm, Tuesday, Wednesday 8am-6pm, Saturday 10am – 1pm)
The Brain and Spine Foundation
http://www.brainandspine.org.uk (opens in a new window)
Offering support and advice about prevention, treatment and care of disorders of the brain and spine.
Helpline: 0808 808 1000 (lines open Monday – Thursday 9am - 4pm, Friday 9am – 1pm)
http://www.headway.org.uk/home.aspx (opens in a new window)
Headway provides support and advice to anyone affected by an acquired brain injury. A network of local groups and branches throughout the UK offer a wide range of services.
Helpline: 0808 800 2244 (lines open Monday - Friday 9am-5pm).
https://www.aspire.org.uk/ (opens in a new window)
Providing practical help to people who have been paralysed by Spinal Cord Injury.
BIRT – Brain Injury Rehabilitation Trust
Information and advice for anyone dealing with the unique needs of brain or head injury rehabilitation.
http://www.backuptrust.org.uk/home (opens in a new window)
Support for everyone whose life is affected by a spinal cord injury.
The Brain Tumour Charity
http://www.thebraintumourcharity.org/ (opens in a new window)
Supporting anyone affected by a brain tumour, as well as family, carers and friends.
Helpline: 0808 800 0004 (lines open Monday – Friday 9am -5pm)
Brain (cerebral) aneurysm
Information and support from Headway for those affected by a brain aneurysm.
Helpline: 0808 800 2244 (Monday - Friday 9am-5pm).
http://www.afasicengland.org.uk/ (opens in a new window)
Afasic support children and young adults (up to 25) with communication disability, as well as their parents and the professionals working with them. Network of support groups, publications, training and online message boards.
Helpline: 0300 666 9410 (lines open Monday & Wednesday 10.30am – 4pm)
http://www.encephalitis.info/ (opens in a new window)
Offering support and information for anyone affected by encephalitis.
HEART & CHEST CONDITIONS
British Heart Foundation – BHF
Supporting anyone with a heart condition and offers information to help reduce the risk of heart and circulatory related illness. Helplines are staffed by cardiac nurses and information officers.
Helpline: 0300 330 3311 (lines open Monday - Friday 9am – 5pm)
Children’s Heart Federation
http://www.chfed.org.uk/ (opens in a new window)
Supporting children and young people with congenital and acquired heart conditions, as well as their families.
Information Line: 0300 561 0065 (lines open Monday – Friday 9.30am – 5pm)
Support and information on all types of cardiomyopathy, how to manage the condition and live well.
Helpline: 0800 018 1024 (Monday – Friday 8.30am – 4.30pm)
Cardiac Risk in the Young - CRY
Information on undiagnosed cardiac conditions in young people and what in involved in screening.
Support for young people diagnosed with a life threatening heart condition.
NHS – Congenital Heart Disease
http://www.nhs.uk/conditions/congenital-heart-disease/Pages/Introduction.aspx (opens in a new window)
Information on heart conditions present at birth, and treatments.
Cystic Fibrosis Trust
http://www.cftrust.org.uk (opens in a new window)
Providing information about Cystic Fibrosis.
Helpline: 0300 373 1000 (
lines open Monday - Friday 9.30am – 1.30pm, Tuesday & Thursday till 4.30pm)
Cystic Fibrosis Medicine
http://www.cysticfibrosismedicine.com (opens in a new window)
Further information on Cystic Fibrosis for anyone suffering from this condition, their families and health care professionals.
BLADDER & BOWEL CONDITIONS
Information and support on bowel and bladder conditions in children and teenagers.
Bladder & Bowel UK
Information and support for adults and children with bladder or bowel problems.
KIDNEY & LIVER DISORDERS
National Kidney Federation - NKF
http://www.kidney.org.uk/ (opens in a new window)
Organised by Kidney Patients for Kidney Patients offering support and information online and via the helpline.
Helpline: 0800 169 0936 (lines open Monday - Friday 9am - 5pm)
http://www.nhs.uk/conditions/Kidney-transplant/Pages/Introduction.aspx (opens in a new window)
NHS information on kidney transplant.
Anthony Nolan Trust
http://www.anthonynolan.org/ (opens in a new window)
The Anthony Nolan Trust holds a stem cell register, with further information online or via the helpline.
Information line: 0303 303 0303 (lines open Monday – Friday 8am -5.30pm)
British Bone Marrow Registry
http://www.nhsbt.nhs.uk/bonemarrow/ (opens in a new window)
Information on bone marrow donation including details of how to join the register.
British Liver Trust
http://www.britishlivertrust.org.uk/ (opens in a new window)
Support information for affected by a liver condition.
Helpline: 0800 652 7330 (Monday – Friday 10am – 3pm
Meningitis Research Association
http://www.meningitis.org/ (opens in a new window)
How to recognise the symptoms of meningitis in babies, toddlers or adults; support for anyone affected by meningitis or septicaemia.
Helpline: 080 8800 3344 (lines open Monday – Friday 9am -5pm)
https://www.meningitisnow.org/ (opens in a new window)
Meningitis explained and support for those affected.
Helpline: 080 880 10 388 (lines open Monday – Friday 9am- 5pm)
http://www.myaware.org/ (opens in a new window)
Supporting those diagnosed with Myasthenia Gravis and their families.
http://www.nhs.uk/Conditions/Myasthenia-gravis/Pages/Symptoms.aspx (opens in a new window)
NHS information about Myasthenia Gravis.
Motor Neurone Disease Association
http://www.mndassociation.org/ (opens in a new window)
Information and support for anyone living with a diagnosis of MND in all its forms - ALS, PBP, PMA and PLS.
MND Connect: 0808 802 6262 (lines open Monday–Friday 9am-5pm & 7pm-10.30pm)
http://www.mndscotland.org.uk/ (opens in a new window)
Support for anyone affected by Motor Neurone Disease in Scotland.
NHS – Motor Neurone Disease
http://www.nhs.uk/conditions/Motor-neurone-disease/Pages/Introduction.aspx (opens in a new window)
NHS information about Motor Neurone Disease
Multiple Sclerosis Society
http://www.mssociety.org.uk (opens in a new window)
Support information for anyone affected by MS, with a network of local branches.
Helpline: 0808 800 8000 (lines open Monday – Friday 9am - 7pm)
Next Generation Text for people with hearing and/or speech difficulties: 18001 0808 800 8000
http://www.ms-uk.org/ (opens in a new window)
Providing support advice for anyone affected by MS.
Advice: 0800 783 0518 (lines open Monday – Friday 9am – 5pm
http://www.mstrust.org.uk/information/publications/factsheets/sativex.jsp(opens in a new window)
Information on Sativex and MS.
http://www.parkinsons.org.uk/ (opens in a new window)
Offering support to anyone affected by Parkinson’s disease. Local groups can facilitate bringing together sufferers, carers and families.
Helpline: 0808 800 0303 (lines open Monday – Friday 9am-7pm, Saturdays 10am – 2pm)
NGT Relay: 18001 0808 800 0303 (for use with smart phones, tablets & PC’s )
Rett Syndrome Research Trust
http://www.reverserett.org.uk/ (opens in a new window)
Providing information about Rett Syndrome and its treatment.
TRANSPLANT AND ORGAN DONATION
Stem Cell Transplant
http://www.patient.co.uk/health/Stem-Cell-Transplant.htm(opens in a new window)
Information about stem cell transplants.
http://www.organdonation.nhs.uk/ (opens in a new window)
Information about donor registration.
Organ Donor Line: 0300 123 23 23 (lines open 24 hours a day)
Organ Donation Wales
http://organdonationwales.org/Organ-Donation-is-changing-in-Wales/?lang=en (opens in a new window)
On 1 December 2015, Wales introduced an opt-out system for organ and tissue donation. If you haven’t recorded an organ donation decision (opt in or opt out) on the NHS Organ Donation Register, you will be treated as having no objection to donating any of your organs.
OTHER CONDITIONS & ORGANISATIONS
NHS – Fear of The Dentist
http://www.nhs.uk/Livewell/dentalhealth/Pages/Fearofthedentist.aspx(opens in a new window)
Information about dental issues.
http://www.patients-association.org.uk/ (opens in a new window)
Working for better access to accurate and independent information for patients and the public; equal access to high quality health care for patients; and the right for patients to be involved in all aspects of decision making regarding their health care.
Helpline: 020 8423 8999 (Monday – Friday 9.30am – 5pm)
Health Care & Professionals Council – HCPC
http://www.hpc-uk.org/ (opens in a new window)
The regulatory body for health therapy professionals, including range of independent practitioners from art therapy to speech and language.
Intensive Care Units
NHS information on Intensive Care Units – ICUs ,also called ITUs and CCUs.
Hope Support Services
For young people aged 11 – 25 when a family member is diagnosed with a life-threatening illness. Support for as long as you need it.
Action For Sick Children
http://www.actionforsickchildren.org.uk/ (opens in a new window)
Campaigning organisation for child healthcare, with downloadable guide about consent for parents and children.
Together For Short Lives
http://www.togetherforshortlives.org.uk/ (opens in a new window)
Working for all children with life-threatening and life-limiting conditions and all those who support, love and care for them.Website includes search for palliative care in your area and an information request form.
Helpline: 0808 8088 100 (lines open 10am – 4pm)
http://www.patient.co.uk/ (opens in a new window)
Information by medical professionals on a wide range of medical conditions, diseases and medicines
http://www.nhs.uk/conditions/streptococcal-infections/pages/introduction.aspx (opens in a new window)
NHS information on types of Streptococcal infections.
The Sepsis Trust offers information and support for anyone whose life has been affected by sepsis.
Crohn’s & Colitis UK
Support for Crohn’s Disease, Ulcerative Colitis or other forms of IBD, Inflammatory Bowel Disease.
http://www.nhs.uk/Conditions/Narcolepsy/Pages/Symptoms.aspx(opens in a new window)
Information on Narcolepsy.
http://www.narcolepsy.org.uk/ (opens in a new window)
Support for those whose lives are affected by narcolepsy.
http://smokefree.nhs.uk/why-quit/ (opens in a new window)
NHS advice and help to quit smoking.
http://www.avmsurvivors.org/ (opens in a new window)
AVM Survivors are an online support group
http://www.nhs.uk/Conditions/Sciatica/Pages/Treatment.aspx(opens in a new window)
NHS information on causes and treatment of Sciatica.
Wheelchair Users Group
http://www.wheelchairusers.org.uk/ (opens in a new window)
Assisting wheelchair users in leading full and active lives.
Last updated August 2018