Genetic Interest Group Members

The Genetic Interest Group (GIG) is a national alliance of organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders. Membership application details can be sought by contacting GIG. If you would like to advertise your charity through this web presence, contact GIG.

Genetic Interest Group Members Alphabetical Index

A B C D E F G H I J K L M N O P Q R S T U VW XYZ

To contact any of the organisations below please click on their name and you will be taken to their website address where applicable. If there are any problems please contact melissagig.org.uk.

Action for Sick Children (Scotland)
Telephone: 0131 553 6553

Action on Gilbert's Syndrome

Adrenal Hyperplasia Network
17 Newton Road, Lichfield, Staffordshire WS13 7EF
Telephone 01543 252 961 Fax: 01543 411761

Albinism Fellowship
PO Box 77, Burnley, Lancs BB11 5GN
Telephone 01282 771900

ALD LIFE
(support group for those affected by adrenoleukodystrophy and adrenomyeloneuropathy both personally or medically)
PO Box 43642, London, SE22 0XR
Telephone: 0208 4737493

Alkaptonuria Society
Room 2354B, 4th floor Duncan Building,Royal Liverpool University Hospital, Daulby Street, Liverpool L69 3GA
Telephone: 01517 064387

Alpha I Awareness UK
PO Box 2866, Bristol, BS5 5EE

Alstrom Syndrome UK
49 Southfield Avenue, Paignton, S. Devon TQ3 1LH
Telephone: 01803 524238

Alzheimer's Society
Devon House, 58 St Katherine's Way, London, E1W 1JX
Telephone 0207 423 3500 Fax: 0207 3060808

Androgen Insensitivity Syndrome Support Group(AISSG)
Margaret Simmonds

Anirida Network
109 Gavin Way, Colchester, Essex, CO4 9FR
Telephone: 07870 687614

AMEND - Association for Multiple Endocrine Neoplasia Disorders
PO Box 89, Tunbridge Wells, Kent, TN2 9GL
Telephone: 01423 780594 (9am-8pm only) Fax: 01423 780959

Anorchidism Support Group (ASG)
PO Box 3025, Romford, Essex, RM3 8GX
Telephone: 01708 372597

Antenatal Results and Choices(ARC)
73 Charlotte Street, London, W1T 4PN
Telephone: 0207 6310285

The Arrhythmia Alliance
PO Box 3697, Stratford Upon Avon, Warwickshire, CV37 8YL
Telephone: 01789 450787

The Arthrogryposis Group (TAG)
Telephone: 01299 825781

Assert
(the Angelman Syndrome Support Education and Research Trust)
PO BOX 4962, Nuneaton, CV11 9FD
Telephone: 0300 9990102 

Association for Glycogen Storage Disease (UK)
9 Lindop Road, Hale Altrincham, Cheshire, WA15 9DZ

Ataxia - Telangiectasia Society
IACR, Rothamstead, Harpenden, Herts, AL5 2JQ
Telephone: 01582 760733 Fax: 01582 760162

Ataxia UK
Lincoln House, Kennington Park, 1-3 Brixton Road, London, SW9 6DE
Helpline: 0845 6440606 Office: 0207 5821444 Fax: 0207 5829444

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Barth Syndrome Trust
1 The Vikings, Romsey, Hampshire SO51 5RG
Telephone: 01794 518785

Batten Disease Family Association
c/o Heather House,Heather Drive,Tadley,Hampshire, RG26 4QR
Telephone: 01159 654815

Beckwith-Wiedmann Support Group
The Drum and Monkey, Hazelbury Bryan, Dorset DT10 2EE
Telephone: 07889 211000 (day) or 01258 817573 (eve)
Fax: 01202 205325

British Heart Foundation
Greater London House, 180 Hampstead Road, London NW1 7AW
Heart Information Line: 0300 3303311
Telephone: 0207 554000 Fax: 0207 5540100

The British Porphyria Association
136 Devonshire Road, Durham, DH1 2BL
Telephone: 01474 369231

British Retinitis Pigmentosa Society
PO BOX 350, Buckingham MK18 1GZ
RP Helpline:0845 1232354
Telephone: 01280 821334 Fax: 01280 815900

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Cancer Research UK
PO BOX 123, Lincoln's Inn Field, London WC2A 3PX
Telephone (supporter services): 0207 1216699
Telephone: (switchboard) 0207 2420200 Fax: 0207 1216700 

Cardiomyopathy Association
Unit 10, Chiltern Court, Asheridge Road, Chesham, Bucks HP5 2PX
Freephone (UK only): 0800 018 1024
Telephone: 01494 791224 Fax: 01494 797199

The Cavan Tommy Hoey Trust (Ireland)
(for people affected by XLP,HLH,EBV)
c/o 86 Palmerston Road, Sydenham, Belfast, co Antrim, Northern Ireland BT4 1QD
Telephone: 02890 654471 Fax: 02890 200988

CCHS Support Group
(congenital central hypoventilation syndrome)
24 Larners Road, Dereham, Norfolk, NR19 ILE
Telephone: 01362 696509

Cavernoma Alliance UK (Formely Angioma Alliance)
2 St Helen's Road, Dorchester, Dorset, DT1 1SD

CDLS Foundation
(Cornelia De Lange Syndrome)
106 Lodge Lane, Grays, Essex RM16 2UL
Telephone: 01375 376439 Fax: 0207 5368998

Centronuclear and Myotubular Information Point

CGD Research Trust
(Chronic Granulomatous Disorder)
Manor Farm, Wimborne St, Giles, Dorset BH21 5NL
Telephone: 01725 517977 Fax: 01725 517977

Childhood Eye Cancer Trust (CHECT)
(For families and individuals affected by retinoblastoma)
The Royal London Hospital, Whitechapel Rd, London E1 1BB
Telephone: 0207 3775578 (9am-5pm) Fax: 0207 3770740

Children's Liver Disease Foundation
36 Great Charles Street, Birmingham B3 3JY
Telephone: 01212 123839 Fax: 01212 124300

Children's Mitochondrial Disease Network
Mayfield House, 30 Herber Walk, Chesterway, Northwich CW9 5JB
Telephone: 01606 43946

Children Living with Inherited Metabolic Diseases (CLIMB)
Climb Building, 176 Nantwich Road Crewe CW2 6BG
Freephone (Mon-Fri. 10am-4pm) 08006523181
Telephone: 0845 2412172/73 Fax: 0845 2412174

The Cogent Trust
c/o Dr Colin Steward, The Bristol Royal Hospital for Children, Paul O'Gorman Building, Upper Maudlin Street, Bristol, BS2 8BJ
Telephone: 0117 923 0000 (switchboard)

Cohen Syndrome Support Group
Mrs C Piesse, Wall Grange, Berry Head Road, Brixham Devon TQ5 9AG
Telephone: 01803 883638

Confer - Scotland
Unit 317 Abercromby Business Centre, Glasgow G40 2DD
Telephone: 0141 5541382

Congenital Adrenal Hyperplasia Support Group
2 Windrush Close, Flitwick, Bedfordshire MK45 1PX
Telephone: 01525 717536

Costello Syndrome Support Group
Colin Stone, 90 Parkfield Road North, New Moston, Manchester MC40 3RQ

Cri Du Chat Syndrome Support Group
5 Latimer Drive, Steeple View, Laindon, Essex SS15 4AD
Telephone: 0845 0942725

The Cystic Fibrosis Trust
11 London Road, Bromley, Kent BR1 1BY
Telephone: 0208 4647211 Fax: 0208 3130472

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DEBRA
(National charity for Epidermolysis Bullosa EB)
DEBRA House, 12 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire RG45 6LS
Telephone: 01344 771961 Fax: 01344 762661
International Epidermolysis Bullosa website

Down's Heart Group
PO BOX 4260, Dunstable, Beds LU6 2ZT
Telephone:0845 1668061 Fax: 0845 1668061

Duchenne Family Support Group
78 York Street, London, W1H 1DP
Family Helpline: 0800 1214518 Telephone: 08702 411857

Dyskeratosis Congenita Society
Professor I. Dokal, Academic Department of Paediactrics, Institute of Cell and Molecular Science, Barts and the London, School of Medecine and Dentistry, 4 Newark Street, London E1 2AT
Telephone: 0207 8822205 Fax: 0207 8822195

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East London Branch Sickle Cell Society
Dr E C Opara-Mottoh, 88 Windon Road, London E7 0QY
Telephone: 0208 5196302 Fax: 0208 5796302

Ectodermal Dysplasia Society
108 Charlton Lane, Cheltenham, Glos GL53 9EA
Telephone:01242 261332

Ehlers-Danlos Support Group
PO Box 337, Aldershot, Surrey GU12 6WZ
Telephone: 01252 690940

The Eyeless Trust
PO BOX 1248, Slough SL2 3GJ
Telephone: 01494 672006

The Family Federation of Finland
(a social and healthcare organisation focusing on families)

Fanconi Hope Charitable Trust
(charity supporting the UK Fanconi Anaemia Clinical Network)

Fapgene.org.uk
(Familial Adenomatous Polyposis and Gardners Syndrome)
12 Freeby Close, Melton Mowbray, Leicestershire LE13 1HN
Telephone: 01644 566101

The Fragile X Society
Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA
Telephone: 01371 875100 Fax: 01371 859915

FuchsFriends UK
21 Broomhill Road, Woodford Green, Essex, IG8 9HA
Telephone / Fax: 0208 5042479

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Galactosaemia Support Group
31 Cotysmore Road, Sutton Coldfields, West Midlands B25 6BT
Telephone: 01213 785143

Gauchers Association
3 Bull Pitch, Dursley, Gloucestershire GL11 4NG
Telephone / Fax: 01453 549231

GeneAid
Jane Fennell, 15 Birch Grove, Ashton Makerfield, Wigan Lancashire WN4 0QZ
Telephone: 01942 274565 Fax: 01942 733087

Gorlin Syndrome Group
11 Blackberry Way, Penwortham, Preston, Lancashire PR1 9LQ
Telephone: 01772 496849

Gwent Huntington's Disease Support Group
Patricia Smith, 55 Rectory Road, Crumlin, Gwent, Wales
Telephone: 01495 244960

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Haemochromatosis Society
Hollybush House, Hadley Green Road, Barnet, Herts EN5 5PR
Telephone / Fax: 0208 4491363

Haemophilia Society
First Floor, Petersham House, 57a Hatton Gardens, London EC1N 8JG
Freephone Helpline: 08000186068
Telephone (switchboard): 0207 8311020 Fax: 0207 4054824

Headlines
(the Craniofacial Support group)
128 Beesmoor Road, Frampton Cotterell, Bristol, BS36 2JP
Telephone: 01454 850557

The Hereditary Spastic Paraplegia Support Group (Formely FSP Support Group)
18 Lodmoor Avenue, Weymouth, Dorset DT3 5AF
Helpline: 01702 218184 Telephone: 01305 772286

HITS (UK) Family Support Network
(supporting families with neurocutaneous disorder also known as Hypomelanosis of Ito)
33 Fernworthy Close, Torquay Devon TQ2 7JQ
Telephone: 01803 401018

HME Support Group
(Hereditary Multiple Exostoses Support Group)
Chairperson, PO BOX 207, Chester le Street, DH3 9AR
Telephone: 01438 861866

Huntington's Disease Association (Colchester Branch)
Mrs Joyce Kaye, 18 Chestnut Close, Gt Waldingfield, Sudbury, Suffolk CO10 0RU

Huntington's Disease Association
Neurosupport Centre, Liverpool L3 8LR
Telephone: 01512 983298 Fax: 01512 989440

The Hypermobility Syndrome Association
PO Box 1122, Nailsea, Bristol, BS48 2YZ
Telephone (24hr Ans. machine): 0845 3454465

Hypermobility East Anglia Group
142 Connaught Avenue, Frinton-on-Sea, Essex, CO13 9AD
Telephone: 0845 2410982/05602 399189/0845 2410389 Fax: 08715 227555

Hypoparathyroidism (HPTH) UK
6 The Meads, East Grinstead, West Sussex, RH19 4DF

International Autistic Research Organisation, The
49 Orchard Avenue, Shirely, Croydon CRO 7NE
Telephone: 0208 7770095 Fax: 0208 7762362

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The Jennifer Trust for Spinal Muscular Atrophy
Elta House, Birmingham Road, Stratford-Upon-Avon, Warks CV37 0AQ
Freephone Helpline: 0800 9753100 Telephone: 01789 267520 Fax: 01789 268371

Keratoconus Society
2020 KC Global^TM Vision, Office 6, The Executive Floor, Sington House, Rankine Road, Basingstoke, RG24 8PH
Telephone: 0844 8842922 Fax: 08719 005030

Klinefelter Organisation (UK)
PO BOX 9969, Colchester CO1 9FQ

Klinefelter's Syndrome Association
56 Little Yeldham Road, Little Yeldham, Halstead, Essex, CO9 4QT
Telephone: 0845 2300048

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Laurence Moon Bardet Biedl Society
1 Blackthorn Avenue, Southborough, Tunbridge Wells, Kent TN4 9YA
Telephone: 01892 685311

The Lowe Syndrome Trust
77 West Heath Road, London, NW3 7TH
Telephone (messages): 0208 4586791

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Making it Better - Daniel Courtney Trust
(Microvillous Atrophy support group)
104 Stourbridge Road, Bromsgrove, Worcestershire B61 0AN
Telephone: 01527 871024

Manchester Sickle Cell and Thalassaemia Centre
352 Oxford Road, Manchester, M13 9NL
Telephone: 01612 743322 Fax: 01612 737490

Marfan Association UK
Rochester House, 5 Aldershot Road, Fleet, Hampshire GU51 3NG
Telephone: 01252 810472 Fax: 01252 810473

Marfan Trust
Cardiac & Vascular Sciences, St George's, University of London, Cranmer Terrace, London, SW17 0RE
Telephone: 0208 7251189 Fax: 0208 7253416

The MAX Appeal
(Di George Syndrome / VCFS and 22q11.2 deletion)
Lansdowne House, 13 Meriden Avenue, Stourbridge, West Midlands, DY8 4QN
Tel: 01384 821227

Medical Advisory Service
38 Sutton Court Road, London, W4 4NJ

Moebius Research Trust
Telephone: 01875 819822

Motor Neurone Disease Association
PO Box 246, Northampton NN1 2PR
Telephone: 01604 250505 Fax: 01604 638289

Mosaic Down Syndrome UK

Mowat-Wilson Syndrome Support Group
13 Barry Avenue, Ingol, Preston, Lancashire, PR2 3XL

Muscular Dystrophy Campaign
7 - 11 Prescott Place, London SW4 6BS
Telephone: 020 7720 8255 Fax: 020 7498 0670

Muscular Dystrophy Support Group
Dr Martin Fielden Sakura, Nottingham Fee Lane, Blewbury, Oxon OX11 9PG
Tel: 01235 850653 Fax: 01235 851906

Myotonic Dystrophy Support Group
M A Bowler, 175a Carlton Hill, Carlton, Notts NG4 1GZ

Myrovlytis Trust
Tel: 020 7193 8921 

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Narcolepsy Association (UKAN)
PO Box 68, Lewes, BN7 2UX
Telephone: 0845 4500 394 (local rate call)

NPS UK
(Nail Patella Syndrome)
40 Malcolm Gardens, West Mains, East Kilbride G74 1QX
Telephone: 01355 241277

NASPCS
(charity for incontinent and stoma children)
(nb this website is under construction)
51 Anderson Drive, Valley View Park, Darvel, Aryshire KA17 0DE
Telephone: 01560 322024

National Sickle Cell Programme
Marion B McTair, 34 Sundial Avenue, South Norwood, London SE25 4BX

Nemaline Myopathy
David McDougall, 5 Cairnbank Gardens, Penicuik, Midlothian, EH26 9EA

The Neurofibromatosis Association
Quayside House, 38 High Street, Kingston upon Thames KT1 1HL.
Telephone: 020 8439 1234. Fax: 020 8439 1200. Minicom: 020 8481 0492.

Niemann-Pick Disease Group (UK)
11 Greenwood Close, The Pastures, Fatfield, Washington, Tyne and Wear,NE38 8LR
Telephone: 0191 415 0693

NSPKU
(charity for those with Phenylketonuria PKU)
PO Box 26642, London N14 4ZF
Telephone: 020 8364 3010

Nystagmus Network
13 Tinsley Close, Claypole, Newark, Nottinghamshire NG23 5BS
Telephone: 01636 627 004

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Ohdo Syndrome Family Network
36 Borrowdale Avenue, Gatley, SK8 4QF

OSCAR
(Organisation for Sickle Cell Aneamia - Reading)
Trevor Smith, 4 Kenerton Close, Calcot, Reading, Berkshire RG31 7DG

Osteopetrosis Support Trust
26 Doniford Road, Williton, Taunton, Somerset TA4 4SE
Telephone: 01984 639416

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Pemphigus Vulgaris Network
Flat C, 26 St Germans Road, London SE23 1RJ
Telephone: 0208 6906462

Peutz Jeghers Syndrome Support Group
17 Barton Road, Harlington, Dunstable, Bedfordshire LU5 6LG
Tel: 01582 878350 Fax: 01582 878313

Pick's Disease Support Group

Primary Immunodeficiency Association (PiA)
Alliance House, 12 Caxton Street, London SW1H 0QS
Telephone: 0207 9767640 Fax: 0207 9767641

The PKD Charity
(polycystic kidney disease)
PO Box 141, Bishop Auckland, County Durham DL14 6UD
Telephone: 01388 665004

Plagiocephaly Care UK

Prader Willi Sydrome Association UK
125A London Road, Derby DE1 2QQ
Telephone: 01332 365676 Fax: 01332 360401

Primary Cilary Dyskinesia Family Support Group

PXE Support Group
15 Mead Close, Marlow, Bucks, SL7 1HR
Telephone: 01628 476687 Fax: 01628 486024

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Restricted Growth Association
PO Box 1024, Peterborough PE1 9GX
Telephone: 01733 759458

Rett Syndrome Association UK
Langham House West, Mill Street, Luton LU1 2NA
Telephone: 01582 798910 Fax:  01582 724129

Rubinstein Taybi Support Group
162 Buckfield Road, Leominster, Herefordshire HR6 8UF
Telephone: 01568 616149

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SADS UK
(Sudden Arrythmic Death Syndrome)
The Ashley Jolly SADS Trust, Suite 6, Churchill House, Horndon Ind. Park, Station Road, West Horndon CM13 3XD
Telephone: 01277 811215

Save Babies Through Screening Foundation UK
(also the patient support group for Krabbe Leukodystrophy)

Scottish Huntington's Association
Suite 135, St James Business Centre, Linwood Road, Paisley PA3 3AT
Telephone: 01418 480308

Shwachman Diamond Support
9 Tippett Close, Whitestone, Nuneaton, Warwickshire, CV11 4SU
Telephone: 02476345199

Sickle Cell and Young Stroke Survivors
801 Old Kent Road, London SE15 1NX
Telephone: 0207 6359810 Fax: 0207 6393900

Society for Mucopolysaccharide Diseases
46 Woodside Road, Amersham, Bucks HP6 6AJ
Telephone: 0845 3899901

SOFT UK
(Support Organisation For Trisomy 13/18 and related disorders)
48 Froggats Ride, Walmley Sutton Coldfield, West Midlands B76 2TQ
Telephone: 0121 351 3122

STEPS
(Steps Charity Worldwide)
Warrington Lane, Lymm, Cheshire WA13 0SA
Telephone helpline: 0871 717 0044 Administration: 0871 717 0045
Fax: 01925 750270

Stickler Syndrome Support Group
PO Box 371, Walton on Thames, Surrey KT12 2YS
Telephone: 01932 267635

Syndromes without a name (SWAN)
6 Acorn Close, Gt Wyrley Walsall, West Midlands WS6 6HP
Telephone / Fax: 01922 701234

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Tar Support Group
Little Wings, Whatfield Road, Elmsett, Ipswich IP7 6LS
Telephone (answerphone): 01473 657535

Tay Sachs and Allied Diseases Association
Dee Heaps, 14 Monarch Way, Pinewood, Ipswich, Suffolk IP8 3TA
Telephone: 01443 404156

Telangiectasia Self Help Group
39 Sunny Croft, Downley, High Wycombe, Bucks HP13 5UQ
Telephone: 01494 528047

TOFS
(Tracheo-Oesophageal Fistula Support. Helping children born unable to swallow)
St George's Centre, 91 Victoria Road, Netherfield, Nottingham, NG4 2NN
Tel: 01159 613092 Fax: 01159 613097

Treacher Collins Family Support Group
114 Vincent Road, Norwich, NR1 4HH
Telephone / Fax: 01603 433736

TRPS Support Group UK
7 Stallingborough Road, Keelby, Grimsby, North East Lincolnshire, DN41 8JA
Telephone: 01469 569581
 

Triple X Family Network Support Group
32 Francemary Road, London, SE4 1JS
Telephone: 0208 6909445

Tuberous Sclerosis Association
PO Box 12979, Barnt Green, Birmingham, B45 5AN
Telephone and Fax: 01214 456970

Turner Syndrome Support Society (UK)
13 Simpson Court, 11 South Ave, Clydebank BusinessPark, Clydebank G81 2NR
Telephone: 01419 528006 Fax: 01419 528025

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UK Thalassaemia Society
19 The Broadway, Southgate, London N14 6PH
Telephone: 0208 8820011 Fax: 0208 8828618

Unique- The Rare Chromosome Disorder Support Group
PO Box 2189, Caterham, Surrey CR3 5GN
Telephone / Fax: 01883 330766 

Usher Service
Sense South East Regional Office, Newplan House, 41 East Street, Epsom, Surrey, KT17 1BL

Williams Syndrome Foundation Limited
161 High Street, Tonbridge, Kent TN9 1BX
Telephone: 01732 365152 Fax: 1732 360178

Wolf Hirschhorn Syndrome Support Group UK
Telephone: 0845 603 5338

Worster Drought Syndrome Support Group
10 St Vincent Chase, Braintree, Essex CM7 9UJ

XLH Network
Larry Winger, Elpha Green Cottage, Sparty Lea, Allendale Hexham, Northumberland NE47 9UT

XLP Research Trust
60 Winchester Road, Romsey, Hants SO51 8JA
Telephone: 01794 521077

XP Support Group
(Xeroderma Pigmentosum)
2 Strawberry Close, Prestwood, Great Missenden, Bucks HP16 0SG
Telephone: 01494 890981 Fax: 01494 864439

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