help@rarechromo.org
Understanding Rare Chromosome and Gene Disorders

Unique Families


With a global network of Families & Professionals, Unique can help you find out more about your child's or your own rare chromosome disorder, copy number variant or single gene disorder associated with learning disability and developmental delay. Click the button below to join us. We can answer many of your questions and match you with other families. You'll also be helping us understand the lifetime effects of these rare disorders. Alternatively, for queries, email info@rarechromo.org

BECOME A MEMBER

What is an Array CGH?


Please click the button below to learn about Array CGH. The first of a series of Jargon Busting videos from Unique!

What is an Array CGH?

A caring voice in difficult times...


“Thanks so much for your time yesterday, it meant an awful lot to have a caring, informed voice on the end of the phone in these particularly difficult times.”

Please make a donation so we can help even more families like this, when they most need us, or scroll down for some fundraising ideas.

Donate

Welcome to Unique

Discovering that you or your child has a rare chromosome disorder, copy number variant or single gene disorder causing your child's learning disability, developmental delay and maybe other symptoms can come as a great shock. You might be feeling a mixture of emotions; sadness, confusion, numbness, anger, guilt, "why me?", isolation, bewilderment and very often a sense of grief for the child you had anticipated. You might despair at the lack of information about your own or your child's disorder or that the disorder hasn't even got a 'proper' name. Whatever your feelings and emotions, we know how much it can help to talk to people who understand what you are going through and who even know what you are talking about.

How can we help?

You might want to learn more about your child's rare chromosome disorder, copy number variant or single gene disorder or find another child with the same disorder. We can try to help you with information and family links and matches. Even if your child's disorder is unique, just talking to other parents can help to alleviate feelings of isolation and "Why me?" Please click on the links above and below for more information and to learn how we can help. If you can't find a guide to your child's disorder we might still have members registered on our confidential database with a similar disorder. Just ask us on info@rarechromo.org. Please note that we do not cover mitochondrial or metabolic disorders.

Practical Guides and Packs for Members

We collect information to help families affected by rare chromosome disorders, copy number variants and single gene disorders associated with learning disability and developmental delay with practical daily living and have produced a series of information guides on a variety of topics from communication to grants and funding. Additional practical guides and updates to existing guides will be coming on stream all the time, as fundraising and donations allow, so please do pop back regularly to see what’s new.

 

In 2026 we held a conference for our members, held in Birmingham UK. We had key speakers on a variety of important topics for our members. Each session was recorded so no matter where you are, you can benefit from the information that was shared. You can find the recordings on this page.

Research opportunities

If you’re looking to get involved in research, there are projects that take place around the world. We support many researchers by publicising these opportunities to our members and wider community.

You can learn about what projects we are currently promoting here

UK Membership

We have members living across the UK.  Click on the link below to see how many members live in your county.

UK Membership
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Found 164 results. Page 1 of 1

Country County No. of Members
England -none- 105
England AL 1
England Avon 148
England Bath & NE Somerset 14
England Bedfordshire 178
England Berkshire 160
England Buckinghamshire 169
England Cambridge 1
England Cambridgeshire 277
England Cheshire 309
England Cleveland 72
England Cornwall 143
England County Durham 157
England Cumbria 99
England Derbyshire 201
England Devon 276
England Dorset 165
England Durham 1
England East Riding of Yorkshire 38
England East Sussex 255
England East Yorkshire 72
England Essex 501
England Gloucestershire 147
England Greater Manchester 375
England Hampshire 509
England Herefordshire 38
England Hertfordshire 300
England Humberside 18
England Isle of Man 11
England Isle of Wight 29
England Karnataka 560087 1
England Kent 544
England Lancashire 496
England Leicestershire 178
England Lincolnshire 231
England London 677
England Merseyside 240
England MI 48146 1
England Middlesex 151
England MS 1
England NE Lincolnshire 21
England NM 88012 1
England Norfolk 240
England North Lincolnshire 18
England North Somerset 38
England North Yorkshire 183
England Northampton 1
England Northamptonshire 169
England Northumberland 59
England Nottinghamshire 277
England NSW 1
England NY 1
England OH 4487 1
England Oxfordshire 158
England Rutland 5
England Shropshire 92
England Somerset 189
England South Gloucestershire 31
England South Yorkshire 335
England Staffordshire 210
England Suffolk 196
England Surrey 446
England Tyne & Wear 215
England Tyne and Wear 1
England Udmurtia 426063 1
England Warwickshire 153
England West Dumbartonshire 1
England West Midlands 455
England West Sussex 239
England West Yorkshire 451
England Wiltshire 172
England Worcestershire 106
England Wythenshawe 1
England Yorkshire 17
Ireland  -none- 1
Northern Ireland -none- 13
Northern Ireland Antrim 1
Northern Ireland Co. Antrim 151
Northern Ireland Co. Armagh 48
Northern Ireland Co. Cavan 1
Northern Ireland Co. Cork 2
Northern Ireland Co. Derry 27
Northern Ireland Co. Down 102
Northern Ireland Co. Fermanagh 12
Northern Ireland Co. Londonderry 29
Northern Ireland Co. Tyrone 33
Northern Ireland County Armagh 1
Scotland -none- 35
Scotland Aberdeenshire 72
Scotland Angus 21
Scotland Argyll 5
Scotland Argyll & Bute 15
Scotland Argyllshire 1
Scotland Arran 1
Scotland Ayrshire 35
Scotland Berwickshire 2
Scotland Caithness 4
Scotland Central 10
Scotland Clackmannanshire 4
Scotland Dumfries & Galloway 19
Scotland Dumfrieshire 8
Scotland Dunbartonshire 11
Scotland East Ayrshire 11
Scotland East Dunbartonshire 12
Scotland East Lothian 22
Scotland Fife 67
Scotland Grampian 4
Scotland Highland 17
Scotland Inverclyde 7
Scotland Invernesshire 4
Scotland Isle of Bute 1
Scotland Isle of Lewis 3
Scotland Isle of Skye 2
Scotland Kincardineshire 1
Scotland Kirkcudbrightshire 1
Scotland Lanarkshire 53
Scotland Lothian 26
Scotland Midlothian 42
Scotland Moray 7
Scotland North Ayrshire 10
Scotland North Lanarkshire 49
Scotland Orkney 3
Scotland Outer Hebrides 2
Scotland Perth & Kinross 4
Scotland Perthshire 11
Scotland Renfrewshire 41
Scotland Ross-shire 13
Scotland Roxburghshire 7
Scotland Scottish Borders 12
Scotland Selkirkshire 5
Scotland Shetland 7
Scotland South Ayrshire 6
Scotland South Lanarkshire 26
Scotland Stirlingshire 49
Scotland Strathclyde 86
Scotland Sutherland 1
Scotland Tayside 1
Scotland West Dunbartonshire 4
Scotland West Lothian 45
Scotland Western Isles 1
Scotland Wigtownshire 1
Wales -none- 13
Wales Anglesey 17
Wales Caerphilly 5
Wales Carmarthenshire 32
Wales Ceredigion 13
Wales Clwyd 14
Wales Conwy 15
Wales Denbighshire 21
Wales Dyfed 4
Wales Flintshire 20
Wales Glamorgan 29
Wales Gwent 63
Wales Gwynedd 22
Wales Mid Glamorgan 36
Wales Monmouthshire 28
Wales Neath Port Talbot 1
Wales Pembrokeshire 24
Wales Powys 19
Wales Rhondda Cynon Taff 15
Wales South Glamorgan 44
Wales Torfaen 3
Wales Vale of Glamorgan 24
Wales West Glamorgan 39

International Membership

We welcome families and individuals affected by rare chromosome and autosomal dominant single gene disorders to join our membership, no matter where in the world you live.  Click on the link below to see how many members we have living in your country.

International Membership
View

Found 142 results. Page 1 of 1

Country No. of Members
AB16 7DU 1
Albania 3
Algeria 3
Argentina 108
Aruba 1
Australia 1890
Austria 41
Azerbaijan 2
Bahrain 1
Bangladesh 2
Belarus 13
Belgium 89
Bermuda 3
Bosnia and Herzegovina 14
Botswana 1
Brazil 279
Brunei Darussalam 1
Bulgaria 18
Cambodia 1
Canada 1184
Canary Islands 6
Cayman Islands 1
Chile 55
China 38
Colombia 74
Costa Rica 3
Croatia 36
Cuba 3
Curacao 1
Cyprus 19
Czech Republic 35
Denmark 108
Dominican Republic 6
Ecuador 13
Egypt 14
Eire 680
El Salvador 1
Estonia 8
Faroe Islands 2
Fiji 1
Finland 89
France 246
Georgia 7
Germany 401
Ghana 1
Gibraltar 10
Greece 33
Guam 1
Guatemala 14
Guernsey 16
Hong Kong 28
Hungary 11
Iceland 19
India 81
Indonesia 13
Iran 12
Iraq 2
Ireland  1
Israel 71
Italy 250
Japan 30
Jersey 15
Jordan 8
Kazakhstan 6
Kenya 3
Kosovo 1
Kuwait 7
Latvia 7
Lebanon 7
Lithuania 6
Luxembourg 7
Macedonia 3
Malawi 1
Malaysia 31
Maldives 2
Malta 17
Mexico 67
México 1
Moldova 5
Montenegro 2
Morocco 14
Namibia 1
Netherlands 2
New Caledonia 1
New Zealand 502
Nicaragua 1
Nigeria 4
North Macedonia 4
Northamptonshire 1
Norway 185
Oman 6
Pakistan 12
Palestine 2
Peru 15
Philippines 20
Poland 225
Portugal 58
Puerto Rico 10
Qatar 10
Republic of Panama 4
Romania 70
Russia 201
Saudi Arabia 22
Senegal 1
Serbia 10
Singapore 30
Slovakia 20
Slovenia 21
Somalia 1
South Africa 173
South Korea 13
Spain 267
Sri Lanka 7
Sudan 1
Suriname 1
Swaziland 1
Sweden 166
Switzerland 97
Syria 1
Taiwan 11
Tebessa 1
Thailand 15
The Bahamas 1
The Netherlands 366
Trinidad & Tobago 5
Tunisia 6
Turkey 71
U..S.A. 1
U.S.A 1
U.S.A. 10912
U.S.A., 1
U.S.S. 1
Uganda 1
Ukraine 35
United Arab Emirates 36
United Kingdom 14500
Uruguay 9
US 1
Uzbekistan 5
Venezuela 10
Vietnam 6
Zimbabwe 2