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

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 GIG.

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

Action on Gilbert's Syndrome
PO Box 37848, London, SE23 2WX

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

Alkaptonuria Society
12 High Beeches Court Hey Childwall Liverpool L16 3GA
Telephone: 0151 737 1862

Alpha 1 Support UK
39 College Fields, Marlborough, Wiltshire, SN8 1US
Telephone 0191 257 0358

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

Alzheimer's Society
Gordon House 10 Greencoat Place London SW1P 1PH
Telephone 020 7306 0606 Fax: 020 7306 0808

Androgen Insensitivity Syndrome Support Group(AISSG)
Margaret Simmonds

Anirida Network
5 Cyril Child Close, Colchester, Essex, CO4 3XU

Angioma Alliance UK
2 St Helens Road, Dorchester, Dorset, DT1 1SD

AMEND - Association for Multiple Endocrine Neoplasia Disorders
PO Box 89, Tunbridge Wells, Kent, TN2 9GL

Anorchidism Support Group (ASG)
PO Box 3025 Romford Essex RM3 8GX
Telephone: 01708 372 597

Antenatal Results and Choices(ARC)
Ante-natal Results and Choices 73 - 75 Charlotte Street London W1T 4PN
Telephone: 020 7631 0280

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

The Arthrogryposis Group (TAG)
Tel: 01299 825781

Assert
(the Angelman Syndrome Support Education and Research Trust)
PO BOX 13694 Mussleburgh Scotland EH21 6XZ
Telephone: 01268 415940 Fax: 01268 415940

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 Business Fax +44 (1582) 760162

Ataxia UK
10 Winchester House Kennington Park
Cranmer Road London SW9 6EJ
Telephone: 020 7582 1444 Fax: 020 7582 9444

Batten Disease Family Association
C/O Heather House Heather Drive Tadley Hampshire RG26 4QR

Barth Syndrome Trust
1 Vikings Romsey Hampshire SO51 5RG

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

British Heart Foundation
14 Fitzhardinge Street London W1H 6DH
Information help line: 08450 40 80 40
Telephone: 020 7935 0185 Fax: 020 7486 1273

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

British Retinitis Pigmentosa Society
Telephone Helpline:0845 1232354

Cancer Research UK
61 Lincoln's Inn Field London WC2A 3PX
Telephone (customer services): 020 7009 8820
Telephone: (switchboard) 020 7242 0200

Cardiomyopathy Association
40 The Metro Centre Tolpits Lane Watford Herts WD1 8SB
Freephone from UK only: 0800 018 1024
Telephone: 01923 249977 Fax: 01923 249987

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

CDLS Foundation
(Cornelia De Lange Syndrome)
14 Crossfields, Stoke by Nayland, Suffolk, CO6 4RG
Telephone: 01376 376439 Fax: 020 7536 8998

Centronuclear and Myotubular Information Point

CGD Research Trust
(Chronic Granulomatous Disorder)
Manor Farm Wimborne St Giles Dorset BH21 5NL
Telephone: 01725 517 977 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: 020 737 5578 Fax: 020 7377 0740

Children's Liver Disease Foundation
36 Great Charles Street
Birmingham B3 3JY
Telephone: 0121 212 3839 Fax: 0121 212 4300

Children's Mitochondrial Disease Network
Mayfield House 30 Herber Walk Chesterway Northwich CW9 5JB
Telephone: 01606 44733

Children Living with Inherited Metabolic Diseases (CLIMB)
Steve Hannigan The Climb Building 176 Nantwich Road Crewe CW2 6BG
Telephone: 0870 7700 325 Fax: 0870 7700 327

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

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

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

Cri Du Chat Syndrome Group
Chairman 5 Latimer Drive Steeple View Laindon Essex SS15 4AD
Telephone: 01268 411666

Cardiac Risk in the Young - CRY
Unit 7, Epsom Downs Metro Centre, Tadworth, Surrey, KT20 5LR

The Cystic Fibrosis Trust
11 London Road Bromley Kent BR1 1B4
Telephone: 020 8464 7211 Fax: 020 8464 0623

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

Down's Heart Group
POBox 4260 Dunstable Beds LU6 2ZT
Telephone:0845 166 8061Fax: 0845 166 8061

Duchenne Family Support Group
78 York Street, London, W1H 1DP
Telephone: 0870 241 1847

Dyskeratosis Congenita Society
ProfessorI Dokal Deptartment of Haematology Hammersmith Hospital Du Cane Road London W12 UNN

East London Branch Sickle Cell Society
Dr E C Opara-Mottoh 88 Windon Road London E7 0QY
Telephone: 020 8519 6302 Fax: 020 8579 6302

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

Ehlers-Danlos Support Group
PO Box 335 Farnham GU10 1XJ
Telephone: 01252 690940

The Eyeless Trust
Chairman Quemerford Cottage 50 Malthouse Square Lakes Lane Beaconsfield Bucks HP9 2LE
Telephone: 01494 672006

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

Fapgene.org.uk (Familial Adenomatous Polyposis and Gardners Syndrome)

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

FSP Support Group
8 Brinkworth Road Clathall Illford Essex 1G5 0JS
Telephone: 020 8551 2905

FuchsFriends UK
21 Broomhill Road Woodford Green Essex IG8 9HA
Telephone / Fax: 020 8504 2479

Galactosaemia Support Group
31 Cotysmore Road Sutton Coldfields West Midlands B25 6BT
Telephone: +44 0121 378 5143

Gauchers Association
25 West Cottages London NW6 1RJ
Telephone: 020 7433 1121 Fax: 020 7431 5883

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

Gorlin Syndrome Group
11 Blackberry Way Penworth Preston Lancashire PR1 9LQ

Gwent Huntington's Disease Support Group
Pat Smith, 55 Rectory Road, Crumlin, Gwent, Wales

Haemochromatosis Society
Hollybush House Hadley Green Road Barnet Herts EN5 5PR
Telephone: 020 8449 1363 Fax: 020 8670 1363

Haemophillia Society
First Floor, Petersham House, 57a Hatton Gardens,London EC1N 8JG
Telephone Helpline: 0800 018 6068
Telephone (switchboard): 020 7380 0600 Fax: 020 7387 8220

Headlines
(the craniofacial Support group)
The Administrator, 128 Beesmoor Road, Frampton Cotterell, Bristol, BS36 2JP

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

HME Support Group (Hereditary Multiple Exostoses Support Group)
PO Box 395, Headington DO, Oxford, OX3 9WF

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

Huntington's Disease Association
108 Battersea High Street London SW11 3HP
Telephone: 020 7223 7000 Fax: 020 7223 9489

The Hypermobility Syndrome Association
12 Greenacres, Hadleigh, Benfleet, Essex, SS7 2JB

Hypermobility East Anglia Group
Regional HQ, 142 Connaught Avenue, Frinton-on-Sea, Essex, CO13 9AD

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

International Autistic Research Organisation, The
Gerda McCarthy 49 Orchard Avenue Shirely Croydon CRO 7NE
Telephone: 020 8777 0095 Fax: 020 8776 2362

The Jennifer Trust for Spinal Muscular Atrophy
Elta House Birmingham Road Stratford Upon Avon Warks CV37 0AQ
Telephone: 0870 7743651 Fax: 0870 7743652

Keratoconus (KC) Global
0870 8966444

Klinefelter Organisation (UK)
PO Box 223,Bolton, Lancs, BL18PS

Laurence Moon Bardet Biedl Society
1 Blackthorn Avenue Southborough Tunbridge Wells Kent TN4 9YA
Telephone: 01892 68268

The Lowe Trust
C/O 77 West Heath Road, London, NW3 7TH
Tel: 020 7458 6791

Making it Better - Daniel Courtney Trust
(Microvillous Atrophy support group)
1 Belvedere House, 67 - 69 Belvedere Road, Upper Norwood, London, SE19 2HP
Tel: 020 8325 5065

Manchester Sickle Cell and Thalassaemia Centre
Mrs. Verna Davis, 352 Oxford Road, Manchester, M13 9NL
Tel: 44 161 274 3322 Fax: 44 151 273 7490

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

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

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

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 on 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

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 Group
26 Doniford Road, Williton, Taunton, Somerset TA4 4SE
Telephone: 01984 639416

Pemphigus Vulgaris Network
Ms Zoe Simpson Green 28 Elmthorpe Road Wolvercote Oxford OX2 8PA

Peutz Jeghers Syndrome Support Group(general website)
(US site forPeutz Jeghers Syndrome)
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: 020 7976 7640 Fax: 020 7976 7641

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

Plagiocephaly Care UK

PPUK (Parent Project UK fighting for a cure for Duchenne Muscular Dystrophy)
Epicentre, 41 West Street, Leytonstone, London, E11 4LJ
Telephone: 020 8556 9955

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

Primary Cilary Dyskinesia Family Support Group
60 Billet Lane Berkhamstead Herts HP4 1DR
Telephone: 01442 874878

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

Restricted Growth Association
PO Box 4744 Dorchester DT2 9FA
Telephone: 01308 898445 Fax: 01308 898445

Rett Syndrome Association UK
113 Friern Barnet Road London N11 3EU
Telephone: 0870 770 3266 Fax: 0870 770 3265

Rubinstein Taybi Support Group
21 Cricketers Green Yeadon Leeds LS19 7YS

SADS UK
(The Sudden Adult Death Trust)
22 Rowhedge, Brentwood, Essex, CM13 2TS Telephone: 01277 230642

Scottish Huntington's Association
Thistle House 61 Main Road Elderslie PA5 9BAS
Telephone: 01505 322245 Fax: 01505 382980

Shwachman Diamond Support
5 Lincoln Road, Washingborough, Lincoln, LN4 1EQ
Telephone: 01522 792039 Fax: 01522 79203
Freephone Support Line: 0800 781 2122

Sickle Cell and Young Stroke Survivors
801 Old Kent Road, London SE15 1NX
Telephone: 020 7635 9810 Fax: 020 7639 3900

Society for Mucopolysaccharide Diseases
46 Woodside Road Amersham Bucks HP6 6AJ
Telephone: 01494 434156

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)
WarringtonLane,Lymm Cheshire WA13 0SA
Telephone helpline: 0871 717 0044
Administration and fax: 0871 717 0045

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: 01922 701234 Fax: 01922 701234

Tar Support Group
Little Wings Whatfield Road Elmsett Ipswich IP7 6LS
Telephone: 01473 657535 ( 8 - 9 PM GMT)

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: 0115 961 3092 Fax: 0115 961 3097

Treacher Collins Family Support Group
114 Vincent Road, Norwich, NR1 4HH

Triple X Family Network Support Group
32 Francemary Road, London, SE4 1JS

Tuberous Sclerosis Association
PO Box 12979, Barnt Green, Birmingham, B45 5AN
Telephone and Fax: 0121 4456970

Turner Syndrome Support Society (UK)
13 Simpson Court, 11 South Ave, Clydebank BusinessPark,Clydebank G81 2NR
Telephone: 01389 380385 Fax: 01389 380384

UK Thalassaemia Society
19 The Broadway Southgate London N14 6PH
Telephone: 020 8882 0011 Fax: 020 8882 8618

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

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

Wolf Hirschhorn Syndrome Support Group UK
Telephone/Fax: 01634 264816

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

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

XLP Research Trust
60 Winchester Road, Romsey, Hants, SO51 8JA

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