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Interest Groups


Purchasing the DVD
Genes and Life

The following are
Patient Support Groups:

Achondroplasia UK
Orchard Mill Lane
Timsbury
BATH BA3 2JF
Tel/Fax: 01761 471 257
www.achondroplasia.co.uk

Action for ME
PO Box 1302
WELLS
Somerset BA5 1YE
Tel: 01749 670799   
Fax: 01749 672561
www.afme.org.uk

Action on Pain
20 Necton Road
Little Dunham
Norfolk. PE32 2DN
Tel/Fax: 01760 725993
Painline: 0845 6031593
www.action-on-pain.co.uk

Adams Oliver Syndrome Support Group
11 Berry Place
Fairwater
Cardiff CF5 3LQ
Tel: 029 2056 1388

Adrenal Hyperplasia Network
17 Newton Road
Lichfield
Staffordshire WS13 7EF
Tel: 01543 252 961 
Business Fax: 01543 411761
www.ahn.org.uk

Adrenoleukodystrophy Family Support Group
30 - 31 Morley House
320 Regent Street
London W1R 5AB
Tel: 020 7631 3336
Business Fax: 020 7631 3337

Albinsim Fellowship
PO Box 77
Burnley
Lancs BB11 5GN
Tel: 01282 771900
www.albinism.org

Alpha 1 Support UK
39 College Fields
Marlborough
Wiltshire SN8 1US
Tel: 0191 257 0358
www.alpha1.org

Alstrom Syndrome UK
49 Southfield Avenue
Paignton
Devon TQ3 1LH
Tel: 01803 524238
www.alstrom.org.uk

Alzheimer's Society
Gordon House
10 Greencoat Place
London SW1P 1PH
Helpline: 0845 300 0336
Tel: 020 7306 0606
Business Fax: 020 7306 0808
www.alzheimers.org.uk

AMN-Easier (Adrenomyeloneuropathy)
16 Laurier Road
London NW5 1SG
Tel: 020 7267 6573

Aniridia Network
5 Cyril Child Close
Colchester
Essex CO4 3XU
www.aniridia.org.uk

Androgen Insensitivity Syndrome Support Group (AISSG)
PO Box 269
Banbury
Oxon OX15 6YT
www.aissg.org/

Anorchidism Support Group (ASG)
PO Box 3025
Romford
Essex RM3 8GX
Tel: 01708 372 597
www.asg4u.org/

Anthony Nolan Trust
The Royal Free Hospital
Pond Street
Hampstead London NW3 2QG
Tel: 020 7284 1234
www.anthonynolan.org.uk

Arachnoiditis Trust
PO BOX 101
Ripon HG4 2XW
Tel: 01765 605668
www.arachnoiditistrust.org

ARC Ante-natal Results and Choices
73 - 75 Charlotte Street
London W1P 1LB
Tel: 020 7631 0280

Arthritis Care
18 Stephenson Way
London NW1 2HD
Tel: 020 7380 6500 Fax: 020 7380 6505
www.arthritiscare.org.uk

The Arthrogryposis Group (TAG)
Beak Cottage
Dunley
Stourport on Severn DY13 0TZ
Tel: 01747 822655
Fax: 01747 822655
www.tagonline.org.uk

Assert (Angelman Syndrome Support Education and Research Trust)
PO Box 505
Sittingbourne
Kent ME10 1NE
Tel: 01795 429061
Business Fax: 01795 429061
www.angelmanuk.org

Association of Multiple Endocrine Neoplasia Disorders (AMEND)
Lyndene
The Green
Bewerley
Harrogate HG3 5HS
www.amend.org.uk

Association for Glycogen Storage Disease (UK)
Old Hambledon Racecourse,
Sheardley Lane,
Droxford
Hampshire, SO32 3QY
0300 123 2790 Office Hours, Mon - Thurs
0300 123 2799 Out of hours
www.agsd.org.uk

Ataxia - Telangiectasia Society
IACR
Rothamstead
Harpenden
Herts AL5 2JQ
Tel: 01582 760733
Business Fax 01582 760162
www.agsd.org.uk

Ataxia UK
10 Winchester House
Kennington Park
Cranmer Road
London SW9 6EJ
Tel: 020 7582 1444
Business Fax: 020 7582 9444
www.ataxia.org.uk

ATRX Support Group
82 The Crescent
Northwich
Cheshire CW9 8AD

Autism Unravelled
3 Palmera Avenue
Calcot
Reading
Berkshire RG31 7DZ UK
Tel/Fax: 0118 961 5967


B

BackCare The Charity for Healthier Backs
16 Elmtree Road
Teddington
Middlesex TW11 8ST
Tel: 020 8977 5474
Fax: 020 8943 5318
www.backcare.org.uk

Batten Disease Family Association
C/O Heather House
Heather Drive
Tadley
Hampshire RG26 4QR
www.bdfa-uk.org.uk/

Batten Support & Research Trust
16 Melbourne Street
Westham
Weymouth
Dorset DT4 0NG
Tel: 01305 774726
www.bsrt.org.uk

Beating Bowel Cancer
39 Crown Road
St Margarets
Twickenham TW1 3EJ
Tel: 020 8892 5256
Fax: 020 8892 1008
www.bowelcancer.org

Beckwith-Wiedmann Support Group
The Drum and Monkey
Hazelbury
Bryan
Dorset DT10 2EC
Tel: 07889 211000 (day) 01258 817573 (eve)
www.bws-support.org.uk

BEHCETS Organisation
Head Office
PO Box 27
Watchet
Somerset TA23 OYT
Tel: 07713 220303 or 01984 639212
www.behcetsuk.org

BEHÇET'S SYNDROME SOCIETY
3 Church Close
Lambourn
Hungerford
Berks RG17 8PU
Tel: 01488 71116
www.behcets.org.uk

Birth Defects Foundation
BDF Centre
Hemlock Business Park
Hemlock Way
Cannock
Staffs WS11 2GF
Helpline: 08700 70 70 20
Tel (Admin): 01543 468888 Fax: 01543 468999
www.birthdefects.co.uk

Blood Pressure Association
60 Cranmer Terrace
London SW17 0QS
Tel: 020 8772 4994
Fax: 020 8772 4999
www.bpassoc.org.uk

Brain Tumour Action
Brain Tumour Action
124 Crewe Road South
Edinburgh EH4 2NY
Tel: 0131 315 7299
www.braintumouraction.org.uk

Brain Tumour Foundation
P O Box 162
New Malden
Surrey KT3 4WH
Tel: 020 8336 2020
Fax: 020 8336 2020

Breakthrough Breast Cancer
3rd Floor
Kingsway House
103 Kingsway
London WC2B 6QX
Tel: 020 7405 5111
Fax: 020 7831 3873
www.breakthrough.org.uk

Breast Cancer Care
Kiln House
210 New King Road
London SW6 4NZ
National Helpline: 0808 800 6000
Tel (Admin): 020 7384 2984
Tel (Text): 0808 800 6001
www.breastcancercare.org.uk

Breast Cancer Relief
Conavon Court
12 Blackfriars Street
Manchester M3 5BQ
Tel (Volunteer Line: 0800 052 3078
Tel: 0161 834 0220
www.breastcancerrelief.org.uk

British Heart Foundation
14 Fitzharding Street
London W1H 6DH
Tel: 020 748 77122 Business
Fax: 020 7486 1273
www.bhf.org.uk

British Liver Trust
Ransomes
Europark
Ipswich IP3 9QG
Tel: 01473 276326
Fax: 01473 276327
www.britishlivertrust.org.uk

British Lung Foundation
78 Hatton Garden
London EC1N 8LD
Tel: 020 7831 5831
www.lunguk.org

British Polio Fellowship
Eagle Office Centre
The Runway
South Ruislip
Middlesex HA4 6SE
Freephone: 0800 0180586
Local call rate fax: 0845 4500226
www.britishpolio.org

The British Porphyria Association
14 Mollison Rise
Gravesend
Kent DT10 2EC
Tel: 01474 369231

British Retinitis Pigmentosa Society
P.O.Box 350
Buckingham MK18 1GZ
Helpline: 01280 860363
Tel: 01280 821334
Fax: 01280 815900
www.rpfightingblindness.org.uk

British Skin Foundation
19 Fitzroy Square
London W1T 6EH
Tel: 020 7383 0266
Fax: 020 7388 5263
www.britishskinfoundation.org.uk

British Society for Rheumatology
41 Eagle Street
London WC1R 4TL
Tel: 020 7242 3313
Facsimile: 020 7242 3277
www.rheumatology.org.uk

British SPD Support Group
National Childbirth Trust
Alexandra House
Oldham Terrace
Acton London W3 6NH
Tel: 0870 770 3236
Fax: 0870 770 3237
Enquiries Services: 0870 444 8707
www.spd-uk.org

British Thyroid Foundation
PO Box 97
Clifford Wetherby
West Yorkshire LS23 6XD
Tel/Fax: 0870 7707933
www.btf-thyroid.org


C


Cancer Link
11-21 Northdown Street
London N1 9BN
Helpline: 0808 808 0000
Tel (Admin): 020 7833 2818

Cancer Research UK
61 Lincoln's Inn Field
London WC2A 3PX
Tel: 020 7242 0200
www.cancerresearchuk.org

Candid
c/o The National Hospital for Neurology
1st Floor
8 - 11 Queen Square
London WC1N 3BG

Cardiomyopathy Association
40 The Metro Centre
Tolpits Lane
Watford
Herts WD1 8SB
Tel: 01923 249977
Business Fax: 01923 249987
www.cardiomyopathy.org

Caring Matters
Bridge Chapel Centre
Heath Road
Liverpool L19 4XR
www.caringmattersnow.co.uk

CGD Research Trust
Manor Farm
Wimborne
St Giles
Dorset BH21 5NL
Tel/Fax: 01725 517977

Changing Faces
1 & 2 Junction Mews
London W2 1PN
Tel: 020 7706 4232
Fax: 020 7706 4234
www.changingfaces.co.uk

The CHARGE Family Support Group
82 Gwendoline Avenue
London E13 0RD
Tel: 020 8552 6961
www.chargesyndrome.org.uk/

Children's Liver Disease Foundation
36 Great Charles Street
Birmingham B3 3JY
Tel: 0121 212 3839
Facsimile: 0121 212 4300
www.childliverdisease.org

Children's Mitochondrial Disease Network
Mayfield House
30 Herber Walk
Chesterway
Northwich CW9 5JB
Tel: 01606 44733
www.emdn-mitonet.co.uk

CLIMB (Metabolic Diseases Support)
The Climb Building
176 Nantwich Road
Crewe CW2 6BG
Tel: 0870 7700 325
Business Fax: 0870 7700 327 k

CMT UK
6B Dursley Road
Cam Dursley
Gloucestershire GL11 6PE
Tel: 01179 136512

COA (Congenital Ocular Motor Apraxia) Support Group
20 Sheridan Road
Whipton
Exeter EX4 8EY
Tel: 01392 460618 (after 6pm)

College of Health
St Margaret's House
21 Old Ford Road
London E2 9PL
Tel: 020 8983 1225 Fax: 020 8983 1553
www.collegeofhealth.org.uk

Colon Cancer Concern
9 Rickett Street
London SW6 1RU
Tel: (Infoline): 020 7381 4711
Tel: (Admin): 020 7381 9711
Fax: 020 7381 5752
www.coloncancer.org.uk

Connect - The Communication Disability Network
16-18 Marshalsea Road
Southwark
London SE1 1HL
Tel: 020 7367 0840
Fax: 020 7367 0841
www.connect.org

Continence Foundation
The Helpline Nurse
The Continence Foundation
307 Hatton Square
16 Baldwins Gardens
London ECIN 7RJ
Tel: 0845 345 0165
www.continence-foundation.org.uk

The Cogent Trust
5 Dormywood
Ruislip
Middlesex HA4 7UW
Tel: 01895 673947

Cohen Syndrome Support Group
Wall Grange
Berry Head Road
Brixham Devon TQ5 9AG

Congenital Adrenal Hyperplasia Support Group
2 Windrush Close
Flitwick
Beds MK45 1PX
Tel: 01270 259375
www.cah.org.uk

Contact a Family
Helpline on 0808 808 3555
www.cafamily.org.uk

The Cornelia de Lange Syndrome Foundation (CDLS)
106 Lodge Lane
Grays
Essex RM16 2UL
Tel: 01375 376439
Fax: 020 7536 8998
www.cdls.org.uk

CORPAL (carers of those with Agenesis of the Corpus Callosum, and Aicardi Syndrome)
Tel: 01273 477939 OR 020 8404 6620
www.corpal.org.uk

Costello Support Group
90 Parkfield Road North
New Moston
Manchester MC40 3RQ
Tel: 0161 682 2479
www.costellokids.co.uk

Cri Du Chat Syndrome Group
5 Latimer Drive
Steeple View
Laindon
Essex SS15 4AD
Tel: 01268 411666
http://criduchat.org.uk/

The Cystic Fibrosis Trust
11 London Road
Bromley
Kent BR1 1B4
Tel: 020 8464 7211
Business Fax: 020 8464 0623
www.cftrust.org.uk

Cystinosis Foundation - UK & Eire
174 Corwen Road
Tilehurst
Reading RG30 4TA
Helpline: 0118 948 4754
www.cystinosis.org.uk


D

Daisy Network Premature Menopause Support Group
PO BOX 183
Rossendale BB4 6WZ
www.daisynetwork.org.uk

Dariers Disease Support Group
PO Box 36
Milford Haven
Pembrokeshire SA73 3YF

DEBRA
DEBRA House
12 Wellington Business Park
Dukes Ride
Crowthorne Berks RG45 6LS
Tel: 01344 771961 Business
Fax: 01344 762661
www.debra.org.uk

Depression Alliance
35 Westminster Bridge Road
LONDON
SE1 7JB
Tel: 0207 633 0557
Fax: 0207 633 0559
www.depressionalliance.org

Diabetes UK
10 Parkway
London NW1 7AA
Tel: 020 7424 1113
Business Fax: 020 7424 1001
www.diabetes.org.uk

Digestive Disorders Foundation
3 St Andrew's Place
London NW1 4LB
Tel: 020 7486 0341
Fax: 020 7224 2012
www.digestivedisorders.org.uk

Down Syndrome Educational Trust
The Sarah Duffen Centre
Belmont Street
Southsea
Hampshire PO5 1NA
Tel: 023 9285 5330
Fax: 023 9285 5320
www.downsed.org

Down's Heart Group
PO Box 4260
Dunstable
LU6 2ZT
Tel: 0300 102 1644 Business
Fax: 0300 102 1645
www.dhg.org.uk

Down's Syndrome Association
155 Mitcham Road
London SW17 9PG
Tel: 020 8682 4001
Fax: 020 8682 4012
www.downs-syndrome.org.uk

Down's Syndrome Research Foundation
18 Daws Hill Lane
High Wycombe
Buckinghamshire HP11 1PW
Tel: 01494 521826
www.dsrf.co.uk

Down's Syndrome Scotland
158-160 Balgreen Road
Edinburgh EH11 3AU
Tel: 0131 313 4225
Fax: 0131 313 4285
www.dsscotland.org.uk

Dysautonomia Society of Great Britain
DSGB
PO Box 17679
London NW4 1WS
Tel: 020 8357 0038
Fax: 020 8958 8760

Dyschondrosteosis and Madelung Wrist Deformity
66 Ivy Rd
St Denys
Southampton
Hants SO17 2JN
Tel: 02380 584680
www.divdev.fsnet.co.uk/dysch.htm

Dyskeratosis Congenita Society
Department of Haematology Hammersmith Hospital
Du Cane Road
London W12 UNN

The Dystonia Society
46 - 47 Britton Street
London EC1M 5UJ
Tel: 020 7490 5671
Fax: 020 7490 5672
www.dystonia.org.uk


E

East London Branch Sickle Cell Society
88 Windon Road
London E7 0QY
Tel: 020 8519 6302
Business Fax: 020 8579 6302

Ectodermal Dysplasia Society
108 Charlton Lane
Cheltenham
Glos GL53 9EA
www.ectodermaldysplasia.org

Ehlers-Danlos Support Group
PO Box 335
Farnham GU10 1XJ
Tel: 01252 690940
www.ehlers-danlos.org

Ellis van Creveld Foundation
Farthingale Farm
Hackmans Lane
Purleigh
Chelmsford Essex CM3 6RW
Tel: 01621 829675
Fax: 01621 829675

Encephalitis Society
7B Saville Street
Malton
North Yorkshire YO17 7LL
Tel: 01653 699 599
www.encephalitis.info

Epilepsy Action
New Anstey House
Gate Way Drive
Yeadon
Leeds LS19 7XY
Tel: 0113 210 8800
Fax: 0113 391 0300
www.epilepsy.org.uk

Epilepsy Society
Chesham Lane
Chalfont St Peter
Bucks SL9 0RJ
Helpline: 01494 601400
Tel: 01494 601300
Fax: 01494 871927
www.epilepsysociety.org.uk

The Eyeless Trust
Quemerford Cottage
50 Malthouse Square
Lakes Lane
Beaconsfield
Bucks HP9 2LE
Tel: 01494 672006
www.eyeless.org.uk


F

FAS (Fetal Alcohol Syndrome) UK
www.fasstar.com/UK/

Fetal Alcohol Syndrome Trust (FAST)
PO Box 30
Walton
Liverpool L9 8HU
Helpline: 0151 284 2900
Tel (Admin): 0151 284 2900
Fax: 0151 284 2900

Fellowship of Depressives Anonymous
Box FDA Self-Help
Nottingham
Ormiston House
32-36 Pelham Street
Nottingham NG1 2EG
Tel: 01702 433838
Fax: 01702 433843
www.depressionanon.co.uk

Fibromyalgia Association UK
P O Box 206
Stourbridge DY9 8YL
National Helpline:0870 220 1232
Fax: 0870 752 5118
www.fmauk.org/

Foundation for Children with Leukaemia
51 Great Ormond Street
London WC1N 3JQ
Tel: 020 7404 0808
Fax: 020 7404 3666
www.leukaemia.org

The Fragile X Society
Rood End House
6 Stortford Road
Great Dunmow Essex CM6 1DA
Tel: 01371 875100
Business Fax: 01371 859915
www.fragilex.org.uk

UK Familial Spastic Paraplegia Support Group (FSP)
8 Brinkworth Road
Clathall Illford
Essex 1G5 0JS
Help-Line 01702 218184
Tel: 020 8551 2905
www.fspgroup.org

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


G

Galactosaemia Support Group
31 Cotysmore Road
Sutton Coldfields
West Midlands B25 6BT
Tel: 0121 378 5143
www.galactosaemia.org

Gauchers Association
25 West Cottages London NW6 1RJ
Tel: 020 7433 1121
Business Fax: 020 7431 5883
www.gaucher.org.uk

Gorlin Syndrome Group
11 Blackberry Way
Penworth
Preston Lancashire PR1 9LQ
www.gorlin-group.pwp.blueyonder.co.uk

Grown Up Congenital Heart Patients Association
75 Tuddenham Avenue
Ipswich
Suffolk IP4 2HG
Helpline: 0800 854 759
www.gorlingroup.org

Gwent Huntington's Disease Association Support
55 Rectory Road Crumlin Gwent Wales


H

Haemochromatosis Society
Hollybush House
Hadley Green Road
Barnet
Herts EN5 5PR
Tel: 020 8449 1363
Business Fax: 020 8670 6758
www.haemochromatosis.org.uk

Haemophilia Society
Chesterfield House
385 Euston Road
London NW1 3AU
Tel: 020 7380 0600
Business Fax: 020 7387 8220
www.haemophilia.org.uk

Headlines Craniofacial Support
44 Helmsdale Road
Leamington Spa
Warwickshire CV32 7DW
Tel: 01926 334629
www.headlines.org.uk

Headway - The Brain Injury Association
Helpline: 0808 800 2244
Tel: 0115 924 0800
Fax: 0115 958 4446
www.headway.org.uk

Heart Haven
3 Kenver Avenue London N12 0FG
Tel: 020 8445 2732

HITS (UK) Family Support Network
33 Fernworthy Close Edginswell Shipham Torquay Devon TQ2 7JQ
Tel: 01803 401018
www.e-fervour.com/hits

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

Huntington's Disease Association
108 Battersea
High Street
London SW11 3HP
Tel: 020 7223 7000
Business Fax: 020 7223 9489
www.hda.org.uk


I

The IBS Network
Northern General Hospital
Sheffield S5 7AU
IBS Network Helpline: 01543 492 192
Tel: 0114 261 1531
Fax: 0114 261 0112
www.ibsnetwork.org.uk

Incontact (National Action on Incontinence)
SATRA Innovation Park, Rockingham Road, Kettering, NN16 9JH
Tel: 01536 533255
Fax: 0870 770 3249
www.incontact.org

Insulin Dependent Diabetes Trust
PO Box 294 Northampton NN1 4XS
Tel: 01604 622837 Fax: 01604 622838
www.iddtinternational.org

International Autistic Research Organisation
The 49 Orchard Avenue
Shirely
Croydon CRO 7NE
Tel: 020 8777 0095
Business Fax: 020 8776 2362
www.iaro.org.uk/

International Glaucoma Assocation
108c Warner Road
Camberwell
London SE5 9HQ
Tel: 020 7737 3265
Business Fax: 020 7346 5929

International Myeloma Foundation
31 York Place
Edinburgh EH1 3HP
Helpline: 0800 980 3332
Tel (Admin): 0131 557 3332
Fax: 0131 556 9720
www.myeloma.org.uk

Interstitial Cystitis Support Group
76 High Street
Stony
Stratford
Buckinghamshire MK11 1AH
Tel/Fax 01908 569169
www.interstitialcystitis.co.uk


J

James Stewardson Research and Welfare Trust for Children With TPI
19 Duncombe Close
Bramhall
Stockport
Cheshire SK7 3DD
Tel (evening): 0161 439 3146
www.tpitrust.com

The Jennifer Trust for Spinal Muscular Atrophy
Elta House
Birmingham Road
Stratford Upon Avon
Warks CV37 0AQ
Tel: 0870 7743651
Business Fax: 0870 7743652
www.jtsma.org.uk

Juvenile Diabetes Foundation (UK)
19 Angel Gate
City Road
London EC1V 2PT
Tel: 020 7713 2030
Fax: 020 7713 2031
www.jdrf.org.uk


K


Keratoconus Self Help and Support Group
P O Box 26251
London W3 9WQ
Tel: 020 8993 4759
www.keratoconus-group.org.uk

Klinefelter Organisation (UK)
PO Box 128
Netherton
Wakefield WF4 4XY
Tel: 01204 306759
www.klinefelter.org.uk

Klinefelter's Syndrome Association
56 Little Yeldham Road
Little Yeldham
Halstead Essex CO9 4QT
Tel: 01787 237460
Fax: 01787 237460
www.ksa-uk.co.uk

Laurence Moon Bardet Biedl Society
1 Blackthorn Avenue
Southborough
Tunbridge Wells
Kent TN4 9YA
Tel: 01892 682680
www.lmbbs.org.uk

Let's Face It
72 Victoria Avenue
Westgate On Sea Kent CT8 8BH
Tel: 01843 833724
www.letsfaceit.force9.co.uk

The Leukaemia Society (UK)
PO Box 6831
London N22 8XG
Tel: 020 8374 4821 or 020 8889 4663
Fax: 020 8374 4821
www.leukaemiasociety.org

Lincolnshire Post-Polio Network
69 Woodvale Avenue
Lincoln
Lincolnshire LN6 3RD
Helpline: 01522 888601
Tel: 01522 888601
Fax: 0870 1600840
www.lincolnshirepostpolio.org.uk/

The LINK Centre for Deafened People
19 Hartfield Road
Eastbourne
East Sussex BN21 2AR
Tel: 01323 638230
Fax: 01323 642968
Text: 01323 739998
www.linkcentre.org

Lissencephaly Contact Group
Cedarwood Lea Lane
Cookley
Worcestershire DY10 3RH
Tel: 01562 851429
www.lissencephaly.org.uk

LOOK
Queen Alexandra College
49 Court Oak Road
Harborne
Birmingham B17 9TG
Tel: 0121 428 5038
www.look-uk.org

Long QT Family Support Group
PO Box 146
Crawley
West Sussex RH10 7YQ
www.longqt.org.uk

Lupus UK
St James House
Eastern Road
Romford
Essex RM1 3NH
Tel: 01708 731251
Fax: 01708 731252
www.lupusuk.com

Lymphoedema Support Network
St. Luke's Crypt
Sydney Street
London SW3 6NH
Tel: 020 7351 0990 (Administration) F
F ax: 020 7349 9809
www.lymphoedema.org/

Lymphoma Association
PO Box 386
Aylesbury
Buckinghamshire HP20 2GA
Helpline: 0808 808 5555 (Freephone)
Tel (Admin): 01296 619400
www.lymphomas.org.uk


M

Macmillan Cancer Relief
89 Albert Embankment
London SE1 7UQ
Tel: 020 7840 7840
Fax: 020 7840 7841
www.macmillan.org.uk

Manchester Sickle Cell and Thalassaemia Centre
352 Oxford Road
Manchester M13 9NL
Tel: 0161 274 3322
Fax: 0151 273 7490

Manic-Depression Fellowship
Castle Works
21 St. George's Road
London SE1 6ES
Tel: 020 7793 2600
Fax 020 7793 2639
www.mdf.org.uk

Marfan Association UK
5 Aldershot Road
Fleet
Hampshire GU51 3NG
Tel: 01252 810472
Business Fax: 01252 810473
www.marfan.org.uk

ME Association
4 Top Angel
Buckingham Industrial Park
Buckingham
Buckinghamshire MK18 1TH
Tel: 0871 222 7824
Fax: 01280 821602
www.meassociation.org.uk

Ménière's Society
98 Maybury Road
Woking
Surrey GU21 5HX
Tel: 01483 740597 Fax: 01483 755441
Textphone: 01483 771207
www.menieres.org.uk

Meningitis Trust
Fern House
Bath Road
Stroud
Gloucestershire GL5 3TJ
Tel (24hr helpline): 0845 6000 800 (calls charged at local rate)
Tel (Admin): 01453 768000
Fax: 01453 768001
www.meningitis-trust.org

The Men's Health Forum
Tavistock House
Tavistock Square
London WC1H 9HR
Tel: 020 7388 4449
Fax: 020 7388 4477
www.menshealthforum.org.uk

Migraine Action Association
Unit 6
Oakley Hay Lodge Business Park
Great Folds Road
Great Oakley
Northants NN18 9AS
Tel: 01536 461333
Fax: 01536 461444
www.migraine.org.uk

Migraine Trust
2nd Floor
55-56 Russell Square
London WC1B 4HP
Tel: 020 7436 1336
Fax: 020 7436 2880
www.migrainetrust.org

MIND (National Association for Mental Health)
Granta House
15-17 Broadway
London E15 4BQ
Tel (Mindinfoline): 0845 7660 163
Tel (Admin): 020 8519 2122
Fax: 020 8522 1725
www.mind.org.uk

Mosaic Down Syndrome UK
mosaicdownsyndrome.org

Motor Neurone Disease Association
PO Box 246
Northampton NN1 2PR
Tel: 01604 250505 Business
Fax: 01604 638289
www.mndassociation.org

Multiple Sclerosis Trust
Spirella Building
Bridge Road
Letchworth Garden City
Hertfordshire SG6 4ET
Tel: 01462 476700
Fax: 01462 476710
www.mstrust.org.uk

Multiple Sclerosis Society
MS National Centre
372 Edgware Road
Staples Corner London NW2 6ND
Helpline: 0808 800 8000
Tel: 020 8438 0700
www.mssociety.org.uk

Muscular Dystrophy Campaign
7 - 11 Prescott Place London SW4 6BS
Tel: 020 7720 8255 Business
Fax: 020 7498 0670
www.muscular-dystrophy.org

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

Myositis Support Group
146 Newtown Road
Woolston
Southampton Hampshire SO19 9HR
Tel: 023 80 449708
Fax: 023 80 396402
www.myositis.org.uk/

Myotonic Dystrophy Support Group
175a Carlton Hill
Carlton
Notts NG4 1GZ
Helpline: 0115 9870080
Tel: 0115 9875869
Fax: 0115 9876462
www.mdsguk.org


N


Narcolepsy Association UK (UKAN)
Craven House
1st Floor
121 Kingsway
LONDON WC2B 6PA
Tel: 020 7721 8904
Fax: 01322 863056
www.narcolepsy.org.uk

NASPCS (National Advisory Service to Parents of Children with a Stoma)
51 Anderson Drive
Valley View Park
Darvel
Ayrshire KA17 0DE
Tel: 01560 322024
www.naspcs.co.uk

National Aids Trust
New City Cloisters 196 Old Street London EC1V 9FR
Tel: 020 7814 6767
Fax: 020 7216 0111
www.nat.org.uk

National Association for Colitis and Crohn's Disease
4 Beaumont House
Sutton Road
St Albans Herts AL1 5HH
Information Line: 0845 130 2233
Fax: 01727 862550
www.nacc.org.uk

National Association for Premenstrual Syndrome
41 Old Road
East Peckham
Kent TN12 5AP
Helpline United Kingdom 0870 7772177
Tel:(UK) 0870 7772178
www.pms.org.uk

National Association for the Relief of Paget's Disease
323 Manchester Road
Walkden
Worsley
Manchester M28 3HH
Tel: 0161 799 4646
Fax: 0161 799 6511
www.paget.org.uk

National Asthma Campaign
Providence House
Providence Place
London N1 0NT
Helpline: 0845 7 01 02 03
Tel: 020 7226 2260
Facsimile: 020 7704 0740
www.asthma.org.uk

National Eczema Society
Hill House
Highgate Hill
London N19 5NA
Helpline: 0870 241 3604
Tel: 020 7281 3553
Fax: 020 7281 6395
www.eczema.org

National Endometriosis Society
50 Westminster Palace Gardens
Artillery Row
London SW1P 1RR
Tel: 020 7222 2781
Fax: 020 7222 2786
www.endo.org.uk

National Fetal Anti Convulsant Syndrome Association (FACS)
PO Box 10035
Newton of Brux
Glenkindie
Aberdeenshire AB33 8RX
Tel: 01975 571340
www.facsline.org

National Kidney Federation
6 Stanley Street
Worksop
Nottinghamshire S81 7HX
Helpline: 0845 601 0209
Tel: 01909 487795
Fax: 01909 481723
www.kidney.org.uk

National Osteoporosis Society
PO Box 10
Radstock
Bath BA3 3YB
Helpline: 01761 472721
Tel: 01761 471771
Fax: 01761 471104
www.nos.org.uk

National Reye's Syndrome Foundation
15 Nicholas Gardens
Pyrford
Woking GU22 8SD
Tel: 01932 346 843
Fax: 01932 343920
www.reyessyndrome.co.uk

National Sickle Cell Programme
34 Sundial Avenue
South Norwood
London SE25 4BX

The Neurofibromatosis Association
82 London Road
Kingston Upon Thames
Surrey KT2 6PX
Tel: 020 8547 1636
Business Fax: 020 8974 5601

Niemann-Pick Disease Group
Kingslaw House
East Brae
East Wemyss
Kirkcaldy KY1 4RS
Tel: 01592 580672
www.niemann-pick.org.uk/

National Society for Phenylketonuria (NSPKU)
PO Box 26642 London N14 4ZF
Tel: 020 8364 3010
www.nspku.org/

Nystagmus Network
25 Eden Way
Beckenham
Kent BR3 3DN
Tel: 020 8650 8644
www.nystagmusnet.org


O


Osteopetrosis Support Group
C/O Reader in Stem Cell Transplantation
BMT Unit
Royal Hospital for Children
Upper Maudlin Street
Bristol BS2 8BJ
Tel: 0117 342 8523 Business
Fax: 0117 342 8628
www.ost.org.uk


P

Pain Association Scotland
Cramond House
Cramond Glebe Road
Edinburgh
Scotland EH4 6NS
Freephone: 0800 783 6059
Tel: 0131 312 7955
Fax: 0131 312 6007
www.chronicpaininfo.org

Pain Concern
PO Box 13256
Haddington EH41 4YD
Tel: 01620 822572
Fax: 01620 829138
www.painconcern.org.uk

Parkinson's Disease Society
215 Vauxhall Bridge Road
London SW1V 1EJ
Helpline (freephone): 0808 800 0303
Tel: 020 7931 8080
Fax: 020 7233 9908 or 020 7963 9360
www.parkinsons.org.uk

The Patients Association
PO Box 935
Harrow
Middlesex HA1 3YJ
Helpline: 0845 6084455
Tel: 020 8423 9111
Fax: 020 8423 9119
www.patients-association.com

Patient UK
www.patient.co.uk

Patients on intravenous & nasogastric nutrition therapy (PINNT)
PO Box 3126
Christchurch
Dorset BH23 2XS
Tel/Fax: 01202 481 625

The PBC Foundation
54 Queen Street
Edinburgh Scotland EH2 3NS
Tel: 0131 225 8586
Fax: 0131 225 7579
www.pbcfoundation.org.uk

Pemphigus Vulgaris Network
Flat C
26 St Germans Road
LONDON SE23 1RJ
Tel: 020 8690 6462
www.pemphigus.org

Peutz Jeghers Syndrome Support Group
17 Barton Road
Harlington
Dunstable
Bedfordshire LU5 6LG
Tel: 01582 878350
Fax: 01525 873310

Pituitary Foundation
PO Box 1944
Bristol BS99 2UB
Tel/Fax: 0845 450 0375
www.pituitary.org.uk

The PKD Charity (Polycystic Kidney Disease)
Foxhill Close, Foxhill
Scarcliffe
S44 6TH
Tel: 0300 111 1234
www.pkdcharity.co.uk

Prader Willi Sydrome Association UK
125A London Road
Derby DE1 2QQ
Tel: 01332 365676
Business Fax: 01332 360401
www.pwsa.co.uk

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

Primary Immunodeficiency Association (PiA)
42 Alliance House
12 Caxton Street
London SW1H 0QS
Tel: 020 7976 7640
Business Fax: 020 7976 7641
www.pia.org.uk

Princess Royal Trust for Carers
142 Minories London EC3N 1LB
Tel: 020 7480 7788
Fax: 020 7481 4729
www.carers.org

Progressive Supranuclear Palsy Association (PSP)
The Rectory
Wappenham
Towcester
Northants NN12 8SQ
Tel: 01307 860342
Business Fax: 01327 861007
www.pspeur.org

Prostate Cancer Charity
3 Angel Walk
London W6 9HX
Confidential Helpline: 0845 300 8383
Tel: 020 8222 7622
Fax: 020 8222 7639
www.prostate-cancer.org.uk

Proteus Family Network (UK)
31 Baswich Lane
Weeping Cross
Stafford ST17 0BH
Tel: 01785 254953
www.proteus-uk.org

The Psoriasis Association
Milton House
7 Milton Street
Northampton NN2 7JG
Tel: 01604 711129
Fax: 01604 792894
https://www.psoriasis-association.org.uk/

PAPAA - Principal source of information and help for people with psoriasis and psoriatic arthritis
(formerly the Psoriatic Arthropathy Alliance)
PO Box 111
St. Albans
Herts AL2 3JQ
Tel: 01923 672837
www.papaa.org

PXE International
Stable House
Swithland Court
Woodhouses Eaves
Leicestershire LE12 8SS

PXE Support Group
15 Mead Close
Marlow
Bucks SL7 1HR
T el: 01628 476687
Business Fax: 01628 486024
www.pxe.org.uk


R

RAGE (Radiotherapy Action Group Exposure)
P.O. Box 95
Benfleet
Essex SS7 2EY

Restricted Growth Association
PO Box 15755
Solihull B93 3FY
Tel: 0300 111 1970
Business Fax: 0300 111 2454
www.restrictedgrowth.co.uk

Rethink
30 Tabernacle Street
London EC2A 4DD
National advice line: 020 8974 6814
General Tel: 0845 456 0455
www.rethink.org

The Retinoblastoma Society
St Bartholomew's Hospital
West Smithfield
London EC1A 7BE
Tel: 020 7600 3309
Business Fax: 020 7600 8579
www.rbsociety.org.uk

Rett Syndrome Association UK
113 Friern Barnet Road
London N11 3EU
Tel: 0870 770 3266
Business Fax: 0870 770 3265
www.rettsyndrome.org.uk

Royal National Institute for the Blind (RNIB)
105 Judd Street
London WC1H 9NE
Helpline: 0845 766 99 99
Tel: 020 7388 1266
Fax. 020 7388 2034
www.rnib.org.uk

RSI Association
380-384 Harrow Road
London W9 2HU
Helpline: 0800 018 5012
Tel: 020 7266 2000
www.rsi.org.uk


S

Sarah Matheson Trust
Pickering Unit
St Mary's Hospital
Praed Street
London W2 1NY
Tel: 020 7886 1520
Fax: 020 7886 1540
www.msatrust.org.uk/

SCOPE
6 Market Road
London N7 9PW
Helpline: 0808 800 3333
Tel: 020 7619 7100
www.scope.org.uk

Scottish Huntington's Association
Thistle House
61 Main Road
Elderslie PA5 9BAS
Tel: 01505 322245
Business Fax: 01505 382980
www.hdscotland.org

Sense
11-13 Clifton Terrace
Finsbury Park London N4 3SR
Tel: 020 7272 7774
Fax: 020 7272 6012
Text: 020 7272 9648
www.sense.org.uk

Seriously Ill for Medical Research
PO Box 504
Dunstable Beds LU6 2LU
Tel: 01582 873108 Business
Fax: 01582 873705
www.simr.org.uk

SHE Trust (Simply Holistic Endometriosis)
14 Moorland Way Lincoln LN6 7JW
Tel/Fax: 0870 7743665 / 4
www.shetrust.org.uk

Shwachman Diamond Support
Big Wood Barn
Gwehelog
Lisk
Donmouthshire NP15 1RO
Tel: 01522 792039
Business Fax: 01522 792039

Sickle Cell Service
Haemoglobinopathy Genetic Counsellor
Haematology Department
Royal Berkshire Hospital
London Road
Reading Berks RG1 5AN
Tel: 0118 987 7689
Business Fax: 0118 987 7755

Sickle Cell Society
54 Station Road
London NW10 4UA
Tel: 020 8961 7795
Fax: 020 8961 8346
www.sicklecellsociety.org

Smith-Magenis Syndrome Foundation
81 Cedar Ridge
Dungannon
Co Tyrone
N. Ireland
Tel: 028 87750050
www.smith-magenis.co.uk

Society for Mucopolysaccharide Diseases
46 Woodside Road
Amersham
Bucks HP6 6AJ
Tel: 01494 434156
Business Fax: 01494 434252
www.mpssociety.co.uk

SOFT UK (Support Organisation for Trisomy 18 & 13)
48 Froggats Ride
Walmley
Sutton Coldfield
West Midlands B76 2TQ
Tel: 0121 351 3122
www.soft.org.uk

Speakability
1 Royal Street
London SE1 7LL
Helpline: 080 8808 9572
Tel: 020 7261 9572
Fax: 020 7928 9542
www.speakability.org.uk

SPECS (Specific Eye Conditions)
PO Box 379
Margate CT9 1WD
Tel: 01843 292 435
www.eyeconditions.org.uk

Spinal Injuries Association
76 St.James's Lane
Muswell Hill
London N10 3DF
Freephone: 0800 980 0501
Tel: 020 8444 2121
Fax: 020 8444 3761
www.spinal.co.uk

STEER Mental Health Organisation
1st floor
15 The Diamond
Derry City
Northern Ireland BT48 7PU
Tel: 028 71 279995
www.steermentalhealth.org

STEPS - The National Association for Children with Lower Limb Abnormalities
Lymm Court
11 Eagle Brow
Lymm
Cheshire WA13 0LP
Tel: 01925 75 7797
Business Fax: 01925 757797

Stickler Syndrome Support Group
PO Box 371
Walton on Thames
Surrey KT12 2YS
Tel: 01932 267635
www.stickler.org.uk

Stroke Association
240 City Road
London EC1V 2PR
Helpline: 0845 30 33 100
Tel: 020 7566 0300
Fax: 020 7490 2686
www.stroke.org.uk

Sturge Weber Foundation (UK)
Burleigh
348 Pinhoe Road
Exeter
Devon EX4 8AF
Tel: 01392 464675
Fax: 01392 464675
www.sturgeweber.org.uk

Sussex ADHD Support Group
56 Ifield Drive
Ifield
Crawley
Sussex RH11 0JA
Tel: 01293 428025

Syndromes without a name (SWAN)
6 Acorn Close
Gt Wyrley
Walsall
West Midlands WS6 6HP
Tel: 01922 701234
Business Fax: 01922 701234
www.undiagnosed.org.uk


T

Tay Sachs and Allied Diseases Association
14 Monarch Way
Pinewood
Ipswich
Suffolk IP8 3TA
Tel: 01443 404156

Telangiectasia Self Help Group
39 Sunny Croft
Downley
High Wycombe
Bucks HP13 5UQ
Tel: 01494 528047
www.telangiectasia.co.uk

Terence Higgins Trust Lighthouse
52-54 Grays Inn Road
London WC1X 8JU
THT Direct Helpline: 0845 1221 200
Tel: 020 7831 0330
Fax : 020 7242 0121
www.tht.org.uk

Thalassaemia Service
Haemoglobinopathy Genetic Counsellor
Haematology Department
Royal Berkshire Hospital
London Road
Reading
Berks RG1 5AN
Tel: 0118 987 7689
Business Fax: 0118 987 7755

Thalidomide Society
19 Central Avenue
Pinner
Middlesex HA5 5BT
Tel: 020 8868 5309
Fax: 020 8868 5309

Thyroid Eye Disease Assocation
Solstice Sea Road
Winchelsea Beach
East Sussex TN36 4LH
Tel/Fax: 01797-222-338
http://www.tedct.co.uk/

Treacher Collins Family Support Group
114 Vincent Road
Thorpe Hamlet
Norwich
Norfolk NR1 4HH
Tel: 01603 433 736 (voice & text)
Fax: 01603 433 736
www.treachercollins.net

Trigeminal Neuralgia Association
PO Box 413
Bromley BR2 9XS
Tel: 020 8462 9122
www.tna.org.uk

Tuberous Sclerosis Association
Church Farm House
Church Road
North Leigh
Oxfordshire OX8 6TX
Tel: 01993 881238
Business Fax: 01993 881238
www.tuberous-sclerosis.org

Turner Syndrome Support Society (UK)
12 Irving Quadrant
Hardgate
Clydebank G81 6AZ
Tel: 01389 380385
Business Fax: 01389 380384
www.tss.org.uk


U

UK Brain Tumour society
BAC House
Bonehurst Road
Horley
Surrey RH6 8QG
Tel: 01293 781479
Fax: 01293 826266
www.braintumour.org

UK Coalition of People Living with HIV and Aids
Tel: 020 7564 2180
www.ukcoalition.org

UK Thalassaemia Society
19 The Broadway
Southgate
London N14 6PH
Tel: 020 8882 0011
Business Fax: 020 8882 8618
www.ukts.org


V

The Vitiligo Society
125 Kennington Road
London SE11 6SF
Tel: 020 7840 0855
www.vitiligosociety.org.uk


W

Williams Syndrome Foundation
161 High Street
Tonbridge Kent TN9 1BX
Tel: 01732 365152
Business Fax: 01732 360178
www.williams-syndrome.org.uk

Wolf Hirschhorn Syndrome Support Group
Tel: 01634 264816
Fax: 01634 264816
www.whs4pminus.co.uk/

Wellbeing of Women
First Floor
Fairgate House
78 New Oxford Street
London WC1A 1HB
Tel: 020 3697 7000
www.wellbeingofwomen.org.uk/

Worster Drought Syndrome Support Group
10 St Vincent Chase
Braintree
Essex CM7 9UJ
www.wdssg.org.uk


X

XLH Network
Elpha Green Cottage
Sparty Lea
Allendale
Hexham
Northumberland NE47 9UT
Tel: 01434 685047
Business Fax: 01434 685047
www.xlhnetwork.org

XP Support Group
2 Strawberry Close
Prestwood
Gt Missenden
Bucks HP16 0SG
Tel: 01494 890981
Business Fax: 01494 864439
xpsupportgroup.org.uk

 

Contact Details