Adrenoleukodystrophy

ALD Life
Contact Family Support Officer
T: 0208 473 7493
E:
W: www.aldlife.org

Alzheimer

Alzheimer's Society
Contact Family Support Officer
E:
W: www.alzheimers.org.uk

Cardiomyopathy

Cardiomyopathy Association
Contact Family Support Officer
T: 01494 791224
E:
W: www.cardiomyopathy.org

Charcot-Marie Tooth Neuropathy

CMT United Kingdom
Contact Karen Butcher
T: 0870 7744 314
E:
W: www.cmt.org.uk

Congenital Adrenal Hyperplasia

Climb CAH UK Support Group
Contact Steve Hannigan, Executive Director
T: 0870 7700327
E:
W: www.cah.org.uk

Cystic Fibrosis

Cystic Fibrosis Trust
Contact Family Support Officer
E:
W: www.cftrust.org.uk

Diamond Blackfan

Diamond Blackfan Anaemia Support Group
Contact Family Support Officer
T: 0845 094 1548
E:
W: www.diamondblackfan.org.uk

Duchenne Muscular Dystrophy

Muscular Dystrophy Campaign
Contact Family Support Officer
T: 0207 720 8055
E:
W: www.muscular-dystrophy.org

Fragile X

Fragile X Society
Contact Lyn Zwink, Family Support Officer
T: 01371 875100
E:
W: www.fragilex.org.uk

Friedreich Ataxia

Ataxia UK
Contact Family Support Officer
T: 0207 582 1444
E:
W: www.ataxia.org.uk

Gauchers Disease

Gauchers Association
Contact Family Support Officer
T: 01453 549231
E:
W: www.gaucher.org.uk

Haemophilia

The Haemophilia Society
Contact Anna Hinchcliffe-Wood, Information
& Support Development Worker
T: 0207 269 0686
E:
W: www.haemophilia.org.uk

Huntingtons Disease

The Huntingtons Disease Association
Contact Family Support Officer
T: 0207 022 1950
E:
W: www.hda.org.uk

Incontinentia Pigmenti

Ectodermal Dysplasia Society
Contact Diana Perry
E:
W: www.ectodermaldysplasia.org

Kidney Disease

National Kidney Federation
Contact Family Support Officer
T: 01909 487795
E:
W: www.kidney.org.uk

Lactic Acidosis

Lactic Acidosis Support Trust
Contact Family Support Officer
T: 01606 83719

Marfan Syndrome

Marfan Association UK
Contact Family Support Officer
T: 01252 810472
E:
W: www.marfan-association.org.uk

Mitochondrial Disease

Children's European Mitochondrial
Disease Network
Contact Paul Preston, Honorary Director
and Chairman
T: 01606 43946
E:
W: www.emdn-mitonet.co.uk

Mucolipidosis

Society for Mucopolysaccharide Diseases
Contact Family Support Officer
T: 0845 389 9901
E:
W: www.mpssociety.co.uk

Neurofibromatosis

The Neurofibromatosis Association UK
Contact Family Support Officer
T: 0208 439 1234
E:
W: www.nfauk.org

Niemann-Pick

The Niemann-Pick Disease Group
Contact Toni Mathieson, National
Development Manager
T: 0191 415 0693
E:
W: www.niemannpick.org.uk

Osteogenesis Imperfecta

The Brittle Bone Society
Contact Family Support Officer
T: 01382 204446
E:
W: www.brittlebone.org

Shwachman-Diamond Syndrome

Shwachman-Diamond Syndrome Support
Contact Family Support Officer
T: 02476 345199
E:
W: www.shwachman-diamondsupport.org

Sickel Cell

Sickel Cell Society
Contact Family Support Officer
T: 0208 961 7795
E:
W: www.sicklecellsociety.org

Spinal Muscular Atrophy

JTSMA
Contact Heather Brown, Publications Manager
T: 0870 774 3651
E:
W: www.jtsma.org.uk

Tay-Sachs

Tay Sachs and Allied
Diseases Association
Contact Dee Heaps
T: 01473 657535

Thalassemia

Uk Thalassemia Society
Contact Family Support Officer
E:
W: www.ukts.org

Treacher Collins

Treacher Collins Family Support Group
Contact Family Support Officer
T: 01603 433736
E:
W: www.treachercollins.net

Tuberous Sclerosis

Tuberous Sclerosis Assocation
Contact Diane Sanson, Head of Administration
T: 0121 445 6970
W: www.tuberous-sclerosis.org