Support Organisations - Medical Conditions

30 March 2017

Support information for many general medical conditions these include allergies, arthritis, genetic conditions, diabetes, female health, male health, meningitis, heart conditions, kidney and liver disorders, Transplant and Organ Donation, Myasthenia Gravis, narcolepsy (featured under 'Other Conditions'). Please scroll down for full list.

ALLERGIES

NHS – Allergies
http://www.nhs.uk/conditions/allergies/pages/introduction.aspx

Information on symptoms, causes and treatment of allergies.

Anaphylaxis Campaign
http://www.anaphylaxis.org.uk/
Information and support for anyone living with severe allergies.

Allergy UK
https://www.allergyuk.org/
Supporting those with allergy and intolerance.

Asthma UK
https://www.asthma.org.uk/
Advice and support for anyone affected by Asthma.
Helpline: 0300 222 5800 (Monday – Friday 9am–5pm)

ARTHRITIS


Arthritis Care
http://www.arthritiscare.org.uk/Home
Arthritis Care offer support advice to anyone living with arthritis.
Helpline: 0808 800 4050 (lines open Monday – Friday 9.30am - 5pm)
Email: helplines@arthritiscare.org.uk


CONGENITAL & GENETIC CONDITIONS

Contact a Family
http://www.cafamily.org.uk
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)
Email: helpline@cafamily.org.uk

Well Child
https://www.wellchild.org.uk/
Support for families caring for a seriously ill child or young person.

Lagan’s Foundation

http://www.lagans.org.uk/
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
Unique provide support and information to families of children with rare chromosome disorders, and professionals. Downloadable leaflets are available online for individual chromosome disorders.
Email: info@rarechromo.org

Achondroplasia UK
http://www.achondroplasia.co.uk
Information and support groups for families of a child with achondroplasia.

aHUS – atypical Haemolytic Uraemic Syndrome

http://ahusuk.org/
Patient and family support for atypical Haemolytic Uraemic Syndrome.

Bubble Foundation UK
http://www.bubblefoundation.org.uk/
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/
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
Information about Cerebral Palsy from SCOPE.

CLAPA - The Cleft Lip and Palate Association
http://www.clapa.com
CLAPA offer information and answers to some of the most commonly asked questions about cleft lip and palate.

Dyspraxia
http://www.nhs.uk/conditions/Dyspraxia-in-adults/Pages/Introduction.aspx
NHS information on Dyspraxia, a common disorder that affects movement and coordination.

Dyspraxia Foundation
http://www.dyspraxiafoundation.org.uk/
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
Information and support across all aspects of living with Down’s syndrome.
Information: 0333 1212 300 (lines open Monday – Friday 10am – 4pm)
Email: info@downs-syndrome.org.uk

Mosaic Down’s Syndrome
http://www.patient.co.uk/health/downs-syndrome-leaflet
Information on all forms of Down’s Syndrome including Mosaic.

Muscular Dystrophy
http://www.nhs.uk/conditions/Muscular-dystrophy/Pages/Introduction.aspx
NHS information on the group of inherited genetic conditions called Muscular Dystrophy.

Muscular Dystrophy UK
http://www.musculardystrophyuk.org/
Information and support for those affected by Muscular Dystrophy.
Helpline: 0800 652 6352 (lines open Monday to Friday 8.30am - 6pm)

The Neuro Foundation
http://www.nfauk.org/
The Neuro Foundation offer support advice to anyone with Neurofibromatosis, downloadable leaflets are available online.

Pfeiffer’s Syndrome - Headlines
http://www.headlines.org.uk/

The UK craniofacial support group
Email: info@headlines.org.uk

Sickle Cell Disease
http://sicklecellsociety.org/
Support and information for Sickle Cell Disease.

Tourette Action

http://www.tourettes-action.org.uk/
Information and support for anyone affected by Tourette Syndrome.
Helpline: 0300 777 8427 (lines open Monday – Friday 9am - 3pm)
Email: help@tourettes-action.org.uk

Usher Syndrome
https://www.sense.org.uk/content/usher-syndrome
Information and support for Usher Syndrome from Sense.
Information line: 0300 330 9256 (lines open Monday to Friday 9am-5pm)
Textphone: 0300 330 9256 (lines open Monday to Friday 9am-5pm)
Sign language interpreter available online Monday to Friday 9am-5pm

Williams Syndrome Foundation

http://www.williams-syndrome.org.uk/
Providing support advice for this rare disorder.

Zika Virus
http://www.nhs.uk/Conditions/zika-virus/Pages/Introduction.aspx
NHS information on Zika virus disease and it’s possible effects, particularly for pregnant women.


DIABETES

Diabetes UK
http://www.diabetes.org.uk/
Diabetes UK offers support and advice to anyone with diabetes.
Careline: 0345 123 2399 (lines open Monday to Friday 9am-7pm)
Email: careline@diabetes.org.uk

Children With Diabetes
http://www.childrenwithdiabetes.com/uk/
Support and information for families of children with diabetes.

Juvenile Diabetes Research Foundation
http://www.jdrf.org.uk/
Offering leaflets, magazine and packs for young people affected by Type 1 diabetes.

Diabetes.co.uk
http://www.diabetes.co.uk/diabetes-complications/diabetes-complications.html
A guide to complications that can occur from diabetes.


FEMALE HEALTH

Female Health Issues
http://www.femalehealthissues.co.uk/
Information and advice on women’s health issues.

MALE HEALTH

NHS - Sexual Dysfunction
http://www.nhs.uk/Livewell/Goodsex/Pages/Malesexualdysfunction.aspx
NHS information on sexual issues, including erectile dysfunction causes and treatments.

Vasectomy
http://www.nhs.uk/Conditions/contraception-guide/Pages/vasectomy-male-sterilisation.aspx
NHS information on vasectomy.

MENINGITIS

Meningitis Research Association
http://www.meningitis.org/
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)

Meningitis Now
https://www.meningitisnow.org/
Meningitis explained and support for those affected.
Helpline: 080 880 10 388 (lines open Monday – Friday 9am- 5pm)

HEART & CHEST CONDITIONS

British Heart Foundation – BHF
http://www.bhf.org.uk/default.aspx#&panel1-1
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/
Supporting children and young people with congenital and acquired heart conditions, as well as their families.
Information Line: 0808 808 5000 (lines open Monday – Friday 9.30am – 2pm)

Cardiac Risk in the Young - CRY

http://www.c-r-y.org.uk/
Information on undiagnosed cardiac conditions in young people.

My Heart
http://www.myheart.org.uk/
Support for young people diagnosed with a heart condition.

NHS – Congenital Heart Disease
http://www.nhs.uk/conditions/congenital-heart-disease/Pages/Introduction.aspx
Information on heart conditions present at birth, and treatments.

Cystic Fibrosis Trust
http://www.cftrust.org.uk
Providing information about Cystic Fibrosis.
Helpline: 0300 373 1000 (lines open Monday - Friday 9am – 5pm)

Cystic Fibrosis Medicine
http://www.cysticfibrosismedicine.com
Further information on Cystic Fibrosis for anyone suffering from this condition, their families and health care professionals.



KIDNEY & LIVER DISORDERS

National Kidney Federation - NKF
http://www.kidney.org.uk/
Organised by Kidney Patients for Kidney Patients offering support and information online and via the helpline.
Helpline: 0845 601 0209 (lines open Monday - Friday 9am - 5pm)

Kidney Transplant
http://www.nhs.uk/conditions/Kidney-transplant/Pages/Introduction.aspx

NHS information on kidney transplant.

Anthony Nolan Trust
http://www.anthonynolan.org/
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/
Information on bone marrow donation including details of how to join the register.

British Liver Trust

http://www.britishlivertrust.org.uk/
Support information for affected by a liver condition.
Helpline: 0800 652 7330 (lines open Monday – Friday 10am – 3pm)
Email: helpline@britishlivertrust.org.uk



TRANSPLANT AND ORGAN DONATION

Stem Cell Transplant

http://www.patient.co.uk/health/Stem-Cell-Transplant.htm
Information about stem cell transplants.

Organ Donation
http://www.organdonation.nhs.uk/
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
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.


MYASTHENIA GRAVIS

Myaware
http://www.myaware.org/
Supporting those diagnosed with Myasthenia Gravis and their families.

NHS
http://www.nhs.uk/Conditions/Myasthenia-gravis/Pages/Symptoms.aspx
NHS information about Myasthenia Gravis.



OTHER CONDITIONS & ORGANISATIONS

Hope Support Services
http://www.hopesupport.org.uk/
For young people aged 11 – 25 when a family member is diagnosed with a life-threatening illness.


Psoriasis Association
https://www.psoriasis-association.org.uk/
Information, advice and support for psoriasis.

NHS – Fear of The Dentist
http://www.nhs.uk/Livewell/dentalhealth/Pages/Fearofthedentist.aspx
Information about dental issues.

Streptococcal Infection
http://www.nhs.uk/conditions/streptococcal-infections/pages/introduction.aspx
NHS information on types of Streptococcal infections.

Patients Association

http://www.patients-association.org.uk/

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)
Email: helpline@patients-association.com

Health Care & Professionals Council – HCPC

http://www.hpc-uk.org/
The regulatory body for health therapy professionals, including range of independent practitioners from art therapy to speech and language.

NHS –Narcolepsy
http://www.nhs.uk/Conditions/Narcolepsy/Pages/Symptoms.aspx
Information on Narcolepsy.

Narcolepsy UK
http://www.narcolepsy.org.uk/
Support for those whose lives are affected by narcolepsy.

Sleep Disorders - MIND
http://www.mind.org.uk/information-support/types-of-mental-health-problems/sleep-problems/#
Mind information on sleep problems.

Action For Sick Children
http://www.actionforsickchildren.org.uk/
Campaigning organisation for child healthcare, with downloadable guide about consent for parents and children.

Together For Short Lives

http://www.togetherforshortlives.org.uk/
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)

Smoke Free
http://smokefree.nhs.uk/why-quit/
NHS advice and help to quit smoking.
Helpline: 0300 123 1044 (lines open Monday - Friday 9am - 8pm, Saturday & Sunday 11am - 4pm)

Arteriovenous malformation - AVM
http://www.avmsupport.co.uk
Offering support information for anyone affected by this rare condition.

AVM Survivors
http://www.avmsurvivors.org/
AVM Survivors are an online support group

Scoliosis Association
http://www.sauk.org.uk/
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
http://www.arthrogryposis.co.uk/
TAG is a support group for anyone who have the condition Arthrogryposis Multiplex Congenita.
Email: help@arthrogryposis.co.uk

British Deaf Association - BDA

http://www.bda.org.uk
BDA support people with hearing problems, with more information and links to BDA in Wales, Scotland and Northern Ireland online.
Email: headoffice@bda.org.uk

National Deaf Children’s Society - NDCS
http://www.ndcs.org.uk/
NDCS support of children with a hearing problem from birth onwards. With information, downloads and live chat service available online.
Helpline: 0808 800 8880 - voice or text (lines open Monday - Friday 9am -5pm)
Email: helpline@ndcs.org.uk

Tuberous Sclerosis Association – TSA

http://www.tuberous-sclerosis.org/
TCA support for anyone affected by TSC as well as their families and carers.

The Restricted Growth Association
http://www.restrictedgrowth.co.uk/
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)
Email: office@restrictedgrowth.co.uk

Shine - Spina Bifida & Hydrocephalus
http://www.shinecharity.org.uk/
Offering supporting to individuals and families who are coping with Spina Bifida and Hydrocephalus.
Information: 01733 555 988 (lines open Monday to Friday 10am-4pm)

Sciatica
http://www.nhs.uk/Conditions/Sciatica/Pages/Treatment.aspx
NHS information on causes and treatment of Sciatica.

Wheelchair Users Group
http://www.wheelchairusers.org.uk/
Assisting wheelchair users in leading full and active lives.

Patient UK
http://patient.info/
Information by medical professionals on a wide range of medical conditions, diseases and medicines.