Genetic Alliance UK - Member Organisations
The Genetic Alliance UK is a national alliance of organisations with a membership of 150 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
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
Action for Sick Children (Scotland)
Telephone: 0131 553 6553
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
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
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)
Margaret Simmonds
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
Assert
(the Angelman Syndrome Support Education and Research Trust)
PO BOX 4962, Nuneaton, CV11 9FD
Telephone: 0300 9990102
Association for Glycogen Storage Disease (UK)
AGSD UK Ltd, Old Hambledon Racecourse, Sheardley Lane, Droxford, Hampshire, SO32 3QY
Telephone: 0300 123 2790
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
Behcets Syndrome Society
8 Abbey Gardens, Evesham, Worcester, WR11 5SP
Tel: 0845 130 7328
Beckwith-Wiedemann Support Group
The Drum and Monkey, Hazelbury Bryan, Dorset DT10 2EE
Telephone: 07889 211000 (day) or 01258 817573 (eve)
Fax: 01202 205325
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
CCHS Support Group
(congenital central hypoventilation syndrome)
24 Larners Road, Dereham, Norfolk, NR19 ILE
Telephone: 01362 696509
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
Centronuclear and Myotubular Information Point
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
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
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
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
Chromosome 18 Registry and Research Society
The Cystic Fibrosis Trust
11 London Road, Bromley, Kent BR1 1BY
Telephone: 0208 4647211 Fax: 0208 3130472
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
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 Eyeless Trust
PO BOX 1248, Slough SL2 3GJ
Telephone: 01494 672006
The Familial Alzheimer's Disease Support Group
Telephone: 07592 540 555 Email:
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
Fight Against Blindness
(Retinitis Pigmentosa), Cambridge, East Anglia and London
PO Box 201, Royston, SG8 1AA
Telephone: 01763 208045
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
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
HAE-UK
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
Headlines
(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
The Histiocytosis Research Trust
PO Box 435, Leeds, LS17 1GE
Telephone: 07850 740241
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
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
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
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
Ichthyosis Support Group
PO Box 1404, Bagshot, GU22 2LS
Telephone: 0845 6029202
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
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
Lipoprotein Lipase Deficiency community
Contact through their community on www.rareconnect.org
The Lowe Syndrome Trust
77 West Heath Road, London, NW3 7TH
Telephone (messages): 0208 4586791
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
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, 175a Carlton Hill, Carlton, Notts NG4 1GZ
Myrovlytis Trust
Tel: 020 7193 8921
Naitbabies.org
Provides information for those affected by Neonatal Alloimmune Thrombocytopenia
Narcolepsy UK
PO Box 13842, Penicuik, EH26 8WX
Telephone: 0845 450 0394 (local rate call)
NPS UK
(Nail Patella Syndrome)
PO Box 26415, East Kilbride, Glasgow, G74 1YW
Telephone: 0800 121 82 98
National Sickle Cell Programme
Marion B McTair, 34 Sundial Avenue, South Norwood, London SE25 4BX
National Voices
1st floor, Bride House, 18-20 Bride Lane, London, EC4Y 8EE
Telephone: 0203 176 0738
Nemaline Myopathy
David McDougall, 5 Cairnbank Gardens, Penicuik, Midlothian, EH26 9EA
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
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 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
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
PXE Support Group
15 Mead Close, Marlow, Bucks, SL7 1HR
Telephone: 01628 476687 Fax: 01628 486024
Restricted Growth Association
PO Box 15755, Solihull B93 3FY
Telephone: 0300 111 1970
Rett Syndrome Association UK
Langham House West, Mill Street, Luton LU1 2NA
Telephone: 01582 798910 Fax: 01582 724129
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
SADS UK
(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
info@savebabiesuk.org, 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
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
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
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: info@thalsoc.demon.co.uk
Thyroid UK
32 Darcy Road, St Osyth, Clacton on Sea, Essex CO16 8QF
Email: Telephone: 01255 820407
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 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
UKPIPS
(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
This group is currently changing it's contact details. Please contact us if you would like us to put you in contact with the group.
Williams Syndrome Foundation Limited
161 High Street, Tonbridge, Kent TN9 1BX
Telephone: 01732 365152 Fax: 1732 360178
The Wilson's Disease Support Group
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
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
The Neurological Alliance
Dana Centre, 165 Queen's Gate, London, SW7 5HE
Telephone: 020 7584 6457