Genetic Alliance UK - Member Organisations

The Genetic Alliance UK is a national alliance of organisations with a membership of 160 charities which support children, families and individuals affected by genetic disorders. Membership application details can be sought by contacting Genetic Alliance UK. If you would like to advertise your charity through this web presence, contact Genetic Alliance UK.

At the bottom of the page there are also links to other patient support organisations who aren't eligible for Genetic Alliance UK membership but that we work closely with.

Genetic Alliance UK 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

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

Advocacy for Neuroacanthocytosis Patients

aHUSUK (atypical Haemolytic Uraemic Syndrome)
PO Box 838, Whitley Bay, NE26 9EP

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

(support group for those affected by adrenoleukodystrophy and adrenomyeloneuropathy both personally or medically)
45 High Street, London, SE15 5EB
Telephone: 0207 701 2628

Alkaptonuria Society

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

Alpha 1 Awareness UK

PO Box 2866, Bristol, BS5 5EE

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

Amy and Friends (Cockayne Syndrome Support)
OCC, Village Road, Oxton, Wirral CH43 5SR,
Telephone: 07949 512968

AMEND - Association for Multiple Endocrine Neoplasia Disorders
The Warehouse, No 1 Draper Street Royal Tunbridge Wells, Kent, TN4 0PG  
Telephone: 01892 516076  Fax: 01892 516076

Androgen Insensitivity Syndrome Support Group(AISSG)

Aniridia Network
Aniridia Network UK, 22 Cornish House, Adelaide Lane, Sheffield, S3 8BJ
Telephone: 07792 867949

Anorchidism Support Group (ASG)
See website for postal address.
Telephone: 01708 372597

Antenatal Results and Choices (ARC)
345 City Road, London, EC1V 1LR
Helpline: 0845 077 2290
Telephone: 0207 713 7356

Anthony Nolan
2-3 Heathgate Place, 75-87 Agincourt Road, London, NW3 2NU
0303 303 0303

The Arthrogryposis Group (TAG)
Telephone: 01299 825781

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

The Association for Glycogen Storage Diseases (UK)

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


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

Batten Disease Family Association
PO Box 504, Fleet, Hampshire, GU51 9GE
Telephone: 01252 416110

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

Behcets Syndrome Society
8 Abbey Gardens, Evesham, Worcester, WR11 5SP
Tel: 0845 130 7328

Breathtakers Charity
(Supporting sufferers of Obliterative Bronchiolitis and other Rare Lung Disease)

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

The Brittle Bone Society
30 Guthrie Street, Dundee, DD1 5BS
Telephone: 01382 204446 Fax: 01382 206771


Cancer Research and Genetics UK
Sherwood, Llandraw Woods, Maesycoed, Pontypridd, South Wales, CF37 1EX
Tel: 01443 408813

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

Cavernoma Alliance UK (Formerly Angioma Alliance)
Cavernoma Alliance UK, Suite 4, Somerleigh Gate, Somerleigh Road, Dorchester, Dorset, DT1 1TL
Telephone: 01305 213876 Email:

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

CGD Society
(Chronic Granulomatous Disorder)
199A Victoria Street, London, SW1E 5NE
Telephone: 0207 199 3199

ChILD Lung Foundation
(For families and individuals affected by children's Interstitial Lung Disease)
4 Turney Road, Wallasey, Wirral.
Telephone: 0151 6398706

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

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

Chromosome 18 Registry and Research Society

CML Support (chronic myeloid leukaemia support group)
2 Belgrave Road, London E17 8QE

CMT United Kingdom
(Charcot-Marie-Tooth Disease)
98 Broadway, Southbourne, Bournemouth, BH6 4EH
Telephone: 01202 432048

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
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

Cure and Action for Tay-Sachs (CATS Foundation)

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


(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

Diamond Blackfan Anaemia UK Support Group
71 - 73 Main Street, Palterton, Chesterfield, S44 6UR
Telephone: 0845 094 1548

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

Dravet Syndrome UK
32 Wilton Avenue, Hampden Park, Eastbourne, East Sussex,BN22 9HZ
Telephone: 07775 347234

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


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 748, Borehamwood, WD6 9HU
Telephone: 0208 736 5604

The Familial Alzheimer's Disease Support Group
Telephone: 07592 540 555 Email:

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

FAP Gene
(Familial Adenomatous Polyposis and Gardners Syndrome)
12 Freeby Close, Melton Mowbray, Leicestershire LE13 1HN
Telephone: 01644 566101

FSH Muscular Dystrophy Support Group
Tel: 020 7803 4800 Email:
The Fragile X Society

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

Friends of Kabuki Syndrome
Telephone: 07882 917 308

The Frontotemporal Dementia Support Group (formerly, Pick's Disease Support Group)

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


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

GIST Support UK
Telephone: 0300 400 0000 Email:

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



55 Sadlers Way, Ringmer, Lewes, East Sussex, BN8 5HG
(Hereditary Angioedema)
01273 813659

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

(the Craniofacial Support group)

128 Beesmoor Road, Frampton Cotterell, Bristol, BS36 2JP
Telephone: 01454 850557

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

Hermansky-Pudlak Syndrome (HPS) Network UK
Telephone: 01442 399882

HITS Worldwide
(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
Suite 24 Liverpool Science Park, Innovation Centre 1, 131 Mount Pleasant, Liverpool L3 5TF
Telephone: 0151 331 5444 Fax: 0151 331 5441

Huntington's Disease Association Northern Ireland (HDANI)
74 Lisburn Square, Lisburn, N.Ireland, BT28 1TS. Telephone: 028 2177 1812

Hungtington's Disease Specialist Service

The Hypermobility Syndrome Association
49 Orchard Crescent, Plymouth. PL9 7NF
Telephone (24hr Ans. machine): 0845 3454465

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

Hypopara 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

Ichthyosis Support Group
PO Box 1404, Bagshot, GU22 2LS
Telephone: 0845 6029202

The Information Point for Centronuclear and Myotubular Myopathy


The Jennifer Trust for Spinal Muscular Atrophy
40 Cygnet Court, Timothy's Bridge Road, Stratford upon Avon, Warwickshire, CV37 9NW
Freephone Helpline: 0800 9753100 Telephone: 01789 267520 Fax: 01789 268371

Jeune Syndrome Foundation

Jewish Genetic Disorders UK
PO Box 65520, London, N3 9BU

Keratoconus Society
2020 KC GlobalTM Vision, Office 6, The Executive Floor, Sington House, Rankine Road, Basingstoke, RG24 8PH
Telephone: +44(0)844 589 8889 Fax: +44(0)844 589 9606

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


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

The Lily Foundation
31 Warren Park, Warlingham, Surrey, CR6 9LD
Telephone: 07947 257247

Lipoprotein Lipase Deficiency community
Contact through their community on

Go top

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

Mosaic Down Syndrome UK

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

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

Muscular Dystrophy Campaign
61 Southwark Street, London, SE1 0HL
Telephone: 020 7803 4800

Myotonic Dystrophy Support Group
M A Bowler, 19/21 Main Road, Gedling, Nottingham, NG4 3HQ

Myrovlytis Trust
Tel: 020 7193 8921 

Provides information for those affected by Neonatal Alloimmune Thrombocytopenia

Narcolepsy UK
PO Box 13842, Penicuik, EH26 8WX
Telephone: 0845 450 0394 (local rate call) 

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

Nephrotic Syndrome Trust

The Neuro Foundation
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)
Suite 2, Vermont House, Concord, Washington, Tyne and Wear NE37 2SQ.
Telephone: 0191 415 0693 

Noonan UK
(website is the US site, but will shortly have a UK section)
Telephone: 01737 789973

Noonan Syndrome Association
Newlife Centre, Hemlock Way, Cannock, Staffordshire, WS11 7GF

(charity for those with Phenylketonuria PKU)
PO Box 26642, London N14 4ZF
Telephone: 030 3040 1090


(Organisation for Sickle Cell Anaemia - 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


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

The PKD Charity
(polycystic kidney disease)
91 Royal College St, London, NW1 0SE
Telephone: 0300 111 1234

Plagiocephaly Care UK

PNH Support Group, King's College Hospital
PNH Service, Haemotology Department, King's College Hospital, Denmark Hill, London, SE5 9RS
Telephone: 0203 299 1039

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

Primary Cilary Dyskinesia Family Support Group

Primary Immunodeficiency UK (PID UK)
199A Victoria Street, London SW1E 5NE
Telephone: 0800 987 8986 Email:

PVNH Support and Awareness

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


Ragdolls UK

Restricted Growth Association
PO Box 5137, Yeovil, BA20 9FF
Telephone: 0300 111 1970

Reverse Rett
The Old Parsonage, Stenner Lane, Didsbury, Manchester, M20 2RQ
Telephone: 0161 434 8117

RP Fighting Blindness
PO Box 350, Buckingham MK18 1GZ
Telephone: 01280 821334

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


(Sudden Arryhthmic 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 & Krabbe Patient Support Group
(also the patient support group for Krabbe Leukodystrophy)
22 Bransdale Avenue, Guiseley, Leeds, LS20 8QA, Telephone: 01943 878770

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

Shwachman-Diamond UK
5 Lincoln Road, Washingborough, Lincs, LE4 1EQ
Telephone: 01522 777940

Sickle Cell and Young Stroke Survivors
8th Floor Hannibal House, Elephant and Castle, London, SE1 6TE
Telephone: 0207 358 4828

The Sickle Cell Society
54 Station Road, London, NW10 4UA
Telephone: 020 8961 4006

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

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

6th floor, Westminster Tower, 3 Albert Embankment, London, SE1 7SP
Telephone: 0207 091 7750 Email:

(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


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

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

The 22crew
Supporting those affected by 22q Deletion Syndrome
228 Smallfield Road, Horley Surrey, RH6 9LT
Tel: 01342 844644 Email:

The Thalidomide Society
6 Abbis Orchard, Ickleford, Hitchin, Herts, SG5 3TN
Tel/Fax: 01462 438212 Email:

Thyroid UK
32 Darcy Road, St Osyth, Clacton on Sea, Essex CO16 8QF
Email: Telephone: 01255 820407

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

Tuberous Sclerosis Association
PO Box 13938, Birmingham, B45 5BF
Telephone and Fax: 05602 420809

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


(UK Primary Immunodeficiency Patient Support)
Postal address 32, Avon Street, Evesham, Worcs. Email:

UK Potsies
To get in touch, please email:

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

Vasculitis UK (Stuart Strange Vasculitis Trust)
West Bank House Winster Matlock DE4 2DQ
Telephone: 01629 650549

The Von Hippel Lindau Contact Group
Telephone: +44 (0)808-189-0891 Email:

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

The Wilson's Disease Support Group

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

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


Other Support organisations

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

Contact A Family
209-211 City Road, London, EC1V 1JN
Helpline: 0808 808 3555

Council for Disabled Children

The Neurological Alliance
Dana Centre, 165 Queen's Gate, London, SW7 5HE
Telephone: 020 7584 6457