National Support Groups

support group

The support groups are listed in order of their name and not necessarily the condition(s) for which they provide support.

If you would like a link added to this site please email Alix Groom.

The groups listed are independent of the Life Knowledge Park. Therefore, the Life Knowledge Park cannot accept responsibility for the information that you may be given by these organisations.

A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Achondroplasia UK

www.achondroplasia.co.uk
see also Restricted Growth Association

Action on Gilbert's Syndrome

PO Box 37848, London, SE23 2WX
www.gilbertssyndrome.org.uk

Adrenal Hyperplasia Network

www.ahn.org.uk

Adrenoleukodystrophy Family Support Group

8 Morley House, 320 Regent Street, London. W1B 3BF
Tel: 020 7631 3336
Email: info@aldfst.org.uk
www.aldfst.org.uk

Albinism Fellowship

PO Box 77, Burnley, Lancashire. BB11 5GN
Tel: 01282 771 900
Email: info@albinism.org.uk
www.albinism.org.uk

ALD LIFE (Adrenoleukodystrophy)

PO Box 43642, London. SE22 0XR
Tel: 020 8473 7493
Email: info@aldlife.org
www.aldlife.org

Alkaptonuria Society

12 High Beeches, Chidwell, Liverpool. L16 3GA
Email: manager@alkaptonuria.info
www.alkaptonuria.info

Alpha1-UK

Tel: 01733 344 135
Email: robin.muskett@ntlworld.com
www.alpha1.org.uk

Alstrom Syndrome UK

www.alstrom.org.uk

Alzheimer's Society

Gordon House, 10 Greencoat Place, London. SW1P 1PH
Tel: 0845 300 0336 8.30am-6.30pm
Email: enquiries@alzheimers.org.uk
www.alzheimers.org.uk

AMEND (Association for Multiple Endocrine Neoplasia Disorders)

31 Pennington Place, Tunbridge Wells, Kent. TN4 0AQ
Tel: 01892 525 308
www.amend.org.uk

AMN-Easier

Tel: 0207267 6573 or 07836 317 419
Email: chris@alexham.co.uk

Androgen Insensitivity Support Group (AISSG)

www.medhelp.org/www/ais

Anorchidism Support Group (ASG)

PO Box 3025, Romford. RM3 8GX
Tel: 01708 372 597
Email: asg.uk@virgin.net
freespace.virgin.net/asg.uk

Antenatal Results and Choices (ARC)

73 Charlotte Street, London. W1T 4PN
Tel: 0207 631 0285
Email: info@arc-uk.org
www.arc-uk.org

Arrhythmia Alliance

PO Box 3697, Stratford Upon Avon, Warwickshire. CV37 8YL
Tel: 01789 450 787
Email: info@arrhythmiaalliance.org.uk
www.arrhythmiaalliance.org.uk

ASSERT (Angelman Syndrome Support Education and Research Trust)

www.angelmanuk.org

Association for Glycogen Storage Disease

www.agsd.org.uk

Ataxia Telangiectasia Society

IACR-Rothamsted, Harpenden, Herts. AL5 2JQ
Tel: 01582 760 733
Email: atcharity@aol.com
www.atsociety.org.uk

Ataxia UK

9 Winchester House, Kennington Park, Cranmer Road, London. SW9 6EJ
Tel: 0845 644 0606
Email: enquiries@ataxia.org.uk
www.ataxia.org.uk

ATR-X Support Group

Contact through Contact a Family

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Batten Disease Family Association (BDFA)

Heather House, Heather Drive, Tadley, Hampshire. RG26 4QR
Tel: 07914 060742
Email: bdfa.secretary@ntlworld.com
www.bdfa-uk.org.uk

Barth Syndrome Trust

1 The Vikings, Romsey, Hampshire. SO51 5RG
Tel: 01794 518 785
Email: info@barthsyndrome.org.uk
www.barthsyndrome.org.uk

BDF Newlife

BDF Centre, Hemlock Business Park, Hemlock Way, Cannock, Staffordshire. WS11 7GF
Tel: 08700 70 70 20
Email: info@bdfnewlife.co.uk
www.bdfnewlife.co.uk

Beating Bowel Cancer

A national charity providing support and information to bowel cancer patients, the general public and the medical profession.
Tel: 020 8892 5256
Email: info@beatingbowelcancer.org
www.beatingbowelcancer.org

Beckwith-Wiedmann Syndrome Support Group

The Drum and Monkey, Hazelbury Bryan, Dorset. DT10 2EE
Tel: 07889 211 000
Email: rbaker5165@aol.com
www.bws-support.org.uk

Behcet's Organisation

Head Office, PO Box 27, Watchet, Somerset. TA23 OYT
www.behcets.org

Breakthrough Breast Cancer

3rd Floor Weston House, 246 High Holborn, London. WC1V 7EX
Information line: 08080 100 200
Breakthrough Breast Cancer provides information and contacts for those concerned about their family history of breast cancer. Breakthrough also campaigns on issues of importance to people with a family history. See www.breakthrough.org.uk/genetics

British Heart Foundation

14 Fitzhardinge Street, London. W1H 6DH
Tel: 08450 70 80 70
www.bhf.org.uk

British Porphyria Association

www.porphyria.org.uk

British Retinitis Pigmentosa Society

Tel: 0845 123 2354
Email: welfare@bprs.org.uk
www.brps.org.uk

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Cancer Research UK

PO Box 123, Lincoln's Inn Fields, London, WC2A 3PX
Tel: 020 7121 6699
www.cancerresearchuk.org

Cardiomyopathy Association

40 The Metro Centre, Tolpits Lane, Watford, Herts. WD18 9SB
Tel: 01923 249 977
Email: info@cardiomyopathy.org
www.cardiomyopathy.org

CdLS UK and Ireland (Cornelia de Lange Syndrome Foundation)

www.cdls.org.uk

CGD Research Trust and Support Group ( Chronic Granulomatous Disorder)

PO Box 6478, Wimborne. BH21 9BU
Tel: 01725 517 977
Email: cgd@cgdrt.co.uk
www.cgd.org.uk

CHANGE study, Congenital Hearts: A national gene/ environment study

www.ncl.ac.uk/ihg/research/change

CHARGE Family Support Group

www.widerworld.co.uk/charge/links.htm

Childhood Eye Cancer Trust

The Royal London Hospital, Whitechapel Road, London. E1 1BB
Tel: 020 7377 5578
Email: info@chect.org.uk
www.chect.org.uk

Children's Liver Disease Foundation

36 Great Charles Street, Birmingham. B3 3JY
Tel: 0121 212 3839
Email: info@childliverdisease.org
www.childliverdisease.org

Children's Mitochondrial Disease Network

Mayfield House, 30 Heber Walk, Chester Way, Northwich. CW9 5JB
Tel: 01606 43946
Email: info_cmdn@btopenworld.com
www.emdn-mitonet.co.uk

CLAPA (Cleft Lip and Palate Association)

First Floor, Green Man Tower, 332B Goswell Road, London. EC1V 7LQ
Tel: 020 7833 4883
Email: info@clapa.com
www.clapa.com

Climb (Children Living with Inherited Metabolic Diseases)

Climb Building, 176 Nantwich Road, Crewe. CW2 6BG
Tel: 0800 652 3181
Email: info.svcs@climb.org.uk
www.climb.org.uk

CMT United Kingdom (Charcot-Marie-Tooth Disease)

PO Box 5089, Christchurch. BH23 7ZX
Tel: 0870 774 4314
Email: secretary@cmt.org.uk
www.cmt.org.uk

Congenital Adrenal Hyperplasia Support Group

2 Windrush Close, Flitwick, Bedford. MK45 1PX
Tel: 01525 717 536
Email: webmaster@cah.org.uk
www.cah.org.uk

Contact a Family

209-211 City Road, London. EC1V 1JN
Tel: 0808 808 3555
Email: info@cafamily.org.uk
www.cafamily.org.uk

CORPAL (Agenesis of the Corpus Callosum and Aicardi Syndrome )

Tel: 01933 386 817 Heather Robinson
Email: Cath86mugg@aol.com
www.corpal.org.uk

Costello Syndrome Support Group

www.costellokids.co.uk

Cri-du-Chat Syndrome Support Group

5 Latimer Drive, Steeple View, Laindon, Essex, SS15 4AD
Tel: 0845 094 2725
Email: info@criduchat.co.uk
www.cridchat.u-net.com

CRY (Cardiac Risk in the Young)

Unit 7, Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey. KT20 5LR
Tel: 01737 363 222
Email: cry@c-r-y.org.uk
www.c-r-y.org.uk

Cystic Fibrosis Trust

11 London Road, Bromley, Kent. BR1 1BY
Tel: 0845 859 1000
Email: enquiries@cftrust.org.uk
www.cftrust.org.uk

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DebRA (Charity for Epidermolysis Bullosa)

DebRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire. RG45 6LS
Tel: 01344 771 961
Email: debra@debra.org.uk
www.debra.org.uk

Down's Heart Group

PO Box 4260, Dunstable, LU6 2ZT
Tel: 0845 166 8061, mobile 07900 678867
Email: info@dhg.org.uk
www.dhg.org.uk

Down's Syndrome Association

Langdon Down Centre, 2a Langdon Park, Teddington. TW11 9PS
Tel: 0845 230 0372
Email: info@downs-syndrome.org.uk
www.downs-syndrome.org.uk

Down's Syndrome North East

PO Box 185, Newcastle upon Tyne. NE12 7WP
Tel: 0870 765 2121
Email: Contact@DownsSyndromeNorthEast.org.uk
www.downssyndromenortheast.org.uk

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Ectodermal Dysplasia Society

108 Charlton Lane, Cheltenham, Glos. GL53 9EA
Tel: 01242 261 332
Email: diana@ectodermaldysplasia.org
www.ectodermaldysplasia.org

Ehlers-Danlos Support Group

PO Box 337, Aldershot. GU12 6WZ
Tel: 01252 690 940
Email: info@ehlers-danlos.org
www.ehlers-danlos.org

Ellis van Creveld Foundation

Farthington Farm, Hackmans Lane, Purleigh, Chelmsford. CM3 6RW

Eyeless Trust

www.eyeless.org.uk

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FAPGene (Familial Adenomatous Polyposis)

www.fapgene.org.uk

FOLKS Friends of Landau Kleffner Syndrome

3 Stone Buildings, Lincoln's Inn, London. WC2A 3XL
Email: info@friendsoflks.com
www.friendsoflks.com

Fragile X Society

Rood End House, 6 Stortford Road, Great Dunmow, Essex. CM6 1DA
Tel: 01371 875 100
Email: info@fragilex.org.uk
www.fragilex.org.uk

FSP Support Group (Familial Spastic Paraplegia)

www.fspgroup.org

Fuchsfriends UK

www.fuchs-dystrophy.org.uk

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Galactosaemia Support Group

31 Cotysmore Road, Sutton Coldfield, West Midlands. B75 6BJ
Tel: 0121 378 5143
Email: sue@galactosaemia.org
www.galactosaemia.org

Gauchers Association

3 Bull Pitch, Dursley, Gloucestershire. GL11 4NG
Tel: 01453 549 231
Email: ga@gaucher.org.uk
www.gaucher.org.uk

Genetic Interest Group

Unit 4D, Leroy House, 436 Essex Road, London. N1 3QP
Tel: 020 7704 3141
Email: mail@gig.org.uk
www.gig.org.uk

Glanzmann's Thrombasthenia

www.glanzmanns.cwc.net

Gorlin Syndrome Group

Tel: 01772 517 624
Email: info@gorlingroup.co.uk
www.gorlingroup.co.uk

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HME Support Group (Hereditary Multiple Exostoses)

PO Box 207, Chester le Street, DH3 9AR
Tel: 01438 861 866
Email: support@hmesg.co.uk
www.hmesg.co.uk

Huntington's Disease Association

Down Stream Building, 1 London Bridge, London. SE1 9BG
Tel: 020 7022 1950
Email:info@hda.org.uk
www.hda.org.uk

Hypermobility Syndrome Association

www.hypermobility.org

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Ichthyosis Support Group

PO Box 7913, Reading. RG6 4ZQ
Tel: 0845 602 9202
Email: isg@ichthyosis.org.uk
www.ichthyosis.co.uk

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James Stewardson Research and Welfare Trust for Children with TPI (Triose Phosphate Isomerase Deficiency)

www.tpitrust.com

Jennifer Trust for Spinal Muscular Atrophy

Elta House, Birmingham Road, Stratford Upon Avon, Warwickshire. CV37 0AQ
Tel: 0800 975 3100
Email: jennifer@jtsma.org.uk
www.jtsma.org.uk

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Kidney Research UK

Kings Chambers, Priestgate, Peterborough. PE1 1FG
Tel: 0845 070 7601
Kidney Health Information Line 0845 300 1499
Email: communications@kidneyresearchuk.org
www.kidneyresearchuk.org

Klinefelter Organisation

P.O.Box 223, Bolton. BL1 8PS
Email: ko.info@talk21.com
www.klinefelter.org.uk

Kleinfelter's Syndrome Association

www.ksa-uk.co.uk

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Lissencephaly Contact Group

www.lissencephaly.org.uk

Little Hearts Matter

11 Greenfield Crescent, Edgbaston, Birmingham. B15 3AU
Tel: 0121 455 8982
www.lhm.org.uk

LOOK

C/O Queen Alexandra College, 49 Court Oak Road, Harborne, Birmingham. B17 9TG
Tel: 0121 428 5038
Email: admin@look-uk.org
www.look-uk.org

Lowe Trust

www.lowetrust.com

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Making it Better-Daniel Courtney Trust (Microvillous Atrophy)

1 Belvedere House, 67 - 69 Belvedere Road, Upper Norwood, London SE19 2HP
Tel: 0208 325 5065
Email: smile@makingitbetter.org.uk
www.makingitbetter.org.uk

Marfan Association

Rochester House, 5 Aldershot Road, Fleet, Hampshire. GU51 3NG
Tel: 01252 810 472
Email: marfan@tinyonline.co.uk
marfan.org.uk

Max Appeal (Di George Syndrome, VCFS and 22q11.2 deletion)

Lansdowne House, 13 Meriden Avenue, Stourbridge, West Midlands. DY8 4QN
Tel: 0845 389 1049
Email: info@maxappeal.org.uk
www.maxappeal.org.uk

Microcephaly Support Group

www.microcephaly.co.uk

Mosaic Down Syndrome UK

www.mosaicdownsyndrome.org

Mowat Wilson Support Group

Tel: 01772 760 119
Email: support@mowatwilsonsyndrome.co.uk (no link)
www.mowatwilsonsyndrome.co.uk

Muscular Dystrophy Campaign

7 - 11 Prescott Place, London. SW4 6BS
Tel: 020 7720 8055
Email: info@muscular-dystrophy.org
www.muscular-dystrophy.org

Myotonic Dystrophy Support Group

175a Carlton Hill, Carlton, Nottingham. NG4 1BG
Tel: 0115 987 0080
Email: mdsg@tesco.net
www.mdsguk.org

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Nemaline Myopathy Support Group

5 Cairnbank Gardens, Penicuik, Midlothian, Scotland. EH26 9EA.
Tel: 01968 674998
Email: david@nemaline.org
www.nemaline.org

Neurofibromatosis Association

Quayside House, 38 High Street, Kingston on Thames. KT1 1HL
Tel: 020 8439 1234
Email: info@nfauk.org
www.nfauk.org

Niemann-Pick Disease Group

11 Greenwood Close, Fatfield, Washington, Tyne and Wear. NE38 8LR
Tel: 0191 415 0693
Email: niemann-pick@zetnet.co.uk
www.niemannpick.org.uk

NSPKU (National Society for Phenylketonuria)

PO Box 26642, London. N14 4ZF
www.nspku.org

Nystagmus Network

www.nystagmusnet.org

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Ohdo Syndrome Family Network

36 Borrowdale Avenue, Gatley, Cheadle, Cheshire. SK8 4QF
Tel: 0161 428 8583
Email: patseville@btinternet.com
www.seville44.fsnet.co.uk

Organic Acidaemias UK

Email: oauk@bigfoot.com
www.oauk.com

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Pelizaeus Merzbacher Disease Support Group affected family support group

43 Fir Tree Close, Flitwick, Bedfordshire. MK45 1NY
Tel: 01525 716 907
Email: pmdsupport@dsl.pipex.com

PiXiE (Pseudoxanthoma Elasticum)

15 Mead Close, Marlow, Bucks, SL7 1HR.
Tel: 01628 476 687
Email: pxeeurope@aol.com
www.pxe.org.uk

PKD Charity (Polycystic Kidney Disease)

PO Box 141, Bishop Auckland, County Durham. DL14 6UD
Tel: 01388 665 004
Email: info@pkdcharity.org.uk
www.pkdcharity.co.uk

Pompe's Group

www.pompe.org.uk

PPUK (Parent Project UK, Muscular Dystrophy)

Epicentre, 41 West Street, Leytonstone, London, E11 4LJ
Tel: 0208 556 9955
Email: info@ppuk.org
www.ppuk.org

Prader-Willi Syndrome Association (UK)

125A London Road, Derby. DE1 2QQ
Tel: 01332 365 676
Email: admin@pwsa-uk.demon.co.uk
www.pwsa.co.uk

Primary Ciliary Dyskinesia Family Support Group

15 Shuttleworth Grove, Wavendon Gate, Milton Keynes. MK7 7RX
Tel: 01908 281 635
Email: Fiona.copeland@stonac.co.uk
www.pcdsupport.org.uk

Primary Immunodeficiency Association

Alliance House, 12 Caxton Street, London. SW1H 0QS
Tel: 020 7976 7640
Email: info@pia.org.uk
www.pia.org.uk

Proteus Family Network

www.proteus-uk.org

Proteus Syndrome Foundation (UK)

2 Watermill Close, Bexhill-on-Sea, East Sussex. TN39 5EJ
Tel: 01424 736 640
Email: tracy.whitewood_neal@virgin.net
www.proteus-syndrome.org.uk

Psoriatic Arthropathy Alliance

www.paalliance.org

PUMPA (Purine Metabolic Patients' Association)

www.pumpa.org

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Restricted Growth Associtaion

PO Box 4008, Yeovil. BA20 9AW
Tel: 01935 841 364
Email: office@restrictedgrowth.co.uk
www.restrictedgrowth.co.uk

Rett Syndrome Association UK

www.rettsyndrome.org.uk

Rubinstein Taybi Syndrome Support Group

Email: mail@rtsuk.org
www.rtsuk.org

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SADS UK (Sudden Adult Death Trust)
Sudden Arrhythmic Death Syndrome

22 Rowhedge, Brentwood, Essex. CM13 2TS
Email: sadsuk@btconnect.com
www.sadsuk.org

Sense (Usher Syndrome)

Rodney Clark Resource Centre, Leeds Road, Robin Hood, Wakefield, WF3 3BG (North Office)
Tel: 0113 205 9500
Email: northenquiries@sense.org.uk
www.sense.org.uk

Shwachman-Diamond Syndrome

18 Merevale Avenue, Nuneaton, Warwickshire. CV11 5LU
Tel: 02476 345 199
Email: enquiries@shwachman-diamondsupport.org
www.shwachman-diamondsupport.org

Sickle Cell and Young Stroke Survivors

www.scyss.org

Smith-Magenis Syndrome Foundation

PO Box 3352, Ascot, Berkshire. SL5 8WS
Tel: 01344 872 805 callers may have to leave a message but a response will be given as soon as possible
Email: info@smith-magenis.co.uk
www.smith-magenis.co.uk

Society for Mucopolysaccharide Diseases

www.mpssociety.co.uk

S.O.F.T UK (Support Organisation For Trisomy 13/18 and related disorders)

Email: enquiries@soft.org.uk
www.soft.org.uk

Steps

www.steps-charity.org.uk

Stickler Syndrome Support Group

www.stickler.org.uk

SWAN (Syndromes Without A Name)

www.undiagnosed.org.uk

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TAR Syndrome Support Group

www.ivh.se/TAR

Telangiectasia Self Help Group

www.telangiectasia.co.uk

Treacher Collins Family Support Group

114 Vincent Road, Thorpe Hamlet, Norwich. NR1 4HH
Tel: 01603 433 736
Email: sue@treachercollins.net
www.treachercollins.net

Tuberous Sclerosis Association

PO Box 12979, Barnt Green, Birmingham. B45 5AN
Tel: 0121 445 6970
Email: support@tuberous-sclerosis.org
www.tuberous-sclerosis.org

Turner Syndrome Support Society

12 Irving Quadrant, Hardgate, Clydebank. G81 6AZ
Tel: 01389 380 385
Email: Turner.Syndrome@tss.org.uk
www.tss.org.uk

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UK Thalassaemia Society

19 The Broadway, Southgate Circus, London. N14 6PH
Tel: 020 8882 0011
Email: office@ukts.org
www.ukts.org

Unique (Rare Chromosome Disorder Support Group)

PO Box 2189, Caterham, Surrey. CR3 5GN
Tel: 01883 330 766
Email: info@rarechromo.org
www.rarechromo.org

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Williams Syndrome Foundation

161 High Street, Tonbridge, Kent. TN9 1BX
Tel: 01732 365 152
Email: John.nelson-wsfoundation@btinternet.com
www.williams-syndrome.org.uk

Wilson's Disease

www.wilsons-disease.org.uk

Wolf-Hirschhorn Support Group

www.whs.webk.co.uk

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XLH Network Inc.

www.xlhnetwork.org

XLP Research Trust

www.xlpresearchtrust.org

XP Support Group

2 Strawberry Close, Prestwood, Great Missenden, Bucks. HP16 0SG
Tel: 01494 890 981
Email: info@xpsupportgroup.org.uk
www.xpsupportgroup.org.uk

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