Twins Trust

Name
Twins Trust
Category
Condition(s)
Exclude All
No
Short Description
Advice for every stage of life with twins, triplets or more.
Telephone Number
0800 138 0509
Website Address
https://twinstrust.org/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project- email 1 sent 20.9.13 email response received on 20.9.13 from Rachel stating new address and new fax- KC updated 23.10.13updated address and phone number using info from website - RC 31/8/16. phone updated AC 6/11/23. Changed name and contact details 8/9/26 AP

Last Contacted
23/10/2013
Last Updated
08/09/2026
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UK Autism Foundation

Name
UK Autism Foundation
Category
Condition(s)
Exclude All
No
Short Description
UK Autism Foundation aims to help and support parents, carers, children and adults with autism.
Telephone Number
02089894810
Website Address
https://www.ukautismfoundation.org/
County
Essex
Address
RM11 1JS
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

updated from weblink to directory entry -RC 8/9/16. phone added, facebook removed AC 13/11/23

Last Contacted
30/11/0001
Last Updated
13/11/2023
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UK Behaviour and Research Group CIC

Name
UK Behaviour and Research Group CIC
Category
Condition(s)
Exclude All
No
Short Description
UK Behaviour and Research Group CIC provides assessment and treatment for a range of developmental, behavioural and mental health disorders and difficulties. UK Young Autism Project is a division of UK Behaviour Analysis and Research Group CIC.
Telephone Number
0203 369 9630
Website Address
https://www.ukyap.org/
Address
SW18 3EX
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Gained consent via email from Julie Morris on 26.9.13, KC added 16.10.13. twitter, instagram added AC 13/11/23

Last Contacted
16/10/2013
Last Updated
13/11/2023
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UK Caravan Centre – Annexe Accommodation

Name
UK Caravan Centre – Annexe Accommodation
Category
,
Short Description
Potential annexe accommodation for young disabled adults who need more independence close to home.
Telephone Number
0800 246 1206
Website Address
https://www.ukcaravancentre.co.uk/annexe-accommodation-solution/
Town
Billericay
County
Essex
Address
CM12 9SB
Age Relevance
16+
Contact History

Madeleine O'Rourke's company

Last Updated
24/10/2024
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UK Young Autism Project (UKYAP)

Name
UK Young Autism Project (UKYAP)
Category
Condition(s)
Exclude All
No
Short Description
UK Young Autism Project specialises in teaching children and young adults with autism, other pervasive developmental disorders and related developmental disorders.
Telephone Number
0203 369 9630
Website Address
https://www.ukyap.org/
Address
SW18 3EX
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

changed tel and address. added contact name - consent via phone from Fiona - updated online 17/12/09 - EG Check details in September 2010 - restructuring companyRefresh project- email 1 sent 9.9.13, email response received on 26.9.13 from Julie Morris with updated description- KC updated 3/10/13. twitter, instagram added AC 13/11/23

Last Contacted
12/09/2017
Last Updated
13/11/2023
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Unique

Name
Unique
Category
Condition(s)
Exclude All
No
Short Description
Unique provides support and information to families of children and individuals with any rare chromosome disorders.
Telephone Number
01883 723356
Website Address
https://www.rarechromo.org/
County
Surrey
Address
RH8 9EE
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

NO CHANGE - CONSENT VIA EMAIL FROM BEVERLY - 1/3/10 - EGRefresh Project 2013 - email 1 sent 20.9.13 BB, no response so email 2 sent 20.1.14Response received 20.1.14 from Beverly Searle. Address and telephone number changed and Fax number removed 5.2.14 LMadded additional email using info from website - RC 17/8/16. email, facebook updated AC 13/11/23

Last Contacted
20/01/2014
Last Updated
13/11/2023
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Up – The Adult Cerebral Palsy Movement

Name
Up – The Adult Cerebral Palsy Movement
Category
,
Condition(s)
Exclude All
No
Short Description
Changing the way people think about cerebral palsy.
Telephone Number
07951 019 508
Website Address
https://adultcphub.org/
Address
N3 2FG
Age Relevance
16+
Contact History

Changed name from The Cerebral Palsy Hub - 12.7.22 AP

Last Updated
12/07/2022
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Us for Them

Name
Us for Them
Category
,
Exclude All
Yes
Short Description
Us for Them is a lobby group of tens of thousands members across all four nations that believes that children’s interests should be put first in any decision impacting them. 
Website Address
https://www.usforthem.co.uk
Age Relevance
4+, 7+, 11+
Contact History

Gained consent via email from Andrea at the parent voice on 19.5.13 added by KC on 3.6.13Refresh Project- email 1 sent 19.9.13, Andrea Wershof confirmed via email on 20.9.13- all details correct- KCcorrected mistake in the description - RC 16/8/17. Changed name from The Parent Voice and updated. 8/12/20 AP. email, facebook updated AC 13/11/23

Last Contacted
05/10/2013
Last Updated
13/11/2023
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VICTAR (Visual Impairment Centre for Teaching & Research)

Name
VICTAR (Visual Impairment Centre for Teaching & Research)
Category
Condition(s)
Short Description
VICTAR (Visual Impairment Centre for Teaching & Research) undertakes research, carries out teaching and training and provides advice and resources in the area of visual impairment and education.
Telephone Number
0121 414 4866
Website Address
https://www.birmingham.ac.uk/research/victar/index.aspx
Town
Edgbaston
Address
B15 2TT
Age Relevance
11+, 16+
Contact History

Refresh project- email 1 sent 17.9.13, email 2 sent 6.12.13Details updated from website - contact name removed and telephone number changed 14.5.14 LM. website, twitter updated, address added AC 13/11/23

Last Contacted
14/05/2014
Last Updated
13/11/2023
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Well Child

Name
Well Child
Category
Short Description
Well Child provides practical and emotional support for seriously ill children, young people and those who care for them across the UK to ensure they receive the best possible quality of care
Telephone Number
01242 530007
Website Address
https://www.wellchild.org.uk/
County
Gloucestershire
Address
GL51 8PL
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

address updated AC 13/11/23

Last Contacted
30/11/0001
Last Updated
13/11/2023
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Working Families

Name
Working Families
Category
Exclude All
Yes
Short Description
Working Families is the UK’s national charity for working parents and carers.
Telephone Number
0300 012 0312
Website Address
https://www.workingfamilies.org.uk/
Address
EC2V 6DL​
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

no changes - consent via email from Janet Mearns - 17/5/10 - EGRefresh Project- email 1 sent 19.9.13 - not yet responded 19.11.13 - KC updated address via letter sent to AP- 19.11.13Phone call 28.3.14 (CM) - all details still correct LMupdated email address - RC 1/8/2016. Major update 28/5/21 AP. Updated whole listing 20.3.26 AP

Last Contacted
20/03/2026
Last Updated
20/03/2026
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Worster-Drought Syndrome Support Group

Name
Worster-Drought Syndrome Support Group
Category
Condition(s)
Exclude All
No
Short Description
Worster-drought Syndrome Support Group provides support by telephone and letter, information on the condition, linking of families, meetings and a newsletter three times a year.
Telephone Number
020 8133 6275
Website Address
https://wdssg.org/
Address
RH4 1HZ
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

no change - consent via telephone from Jacqui - 17/6/10 - EGRefresh Project- email 1 sent 20.9.13, email response received on 20.9.13 from Mark Mayer with updated address, tel and email and chairman name 23.10.13

Last Contacted
23/10/2013
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You’reable

Name
You’reable
Category
,
Exclude All
Yes
Short Description
Youreable is an online community of and for disabled people, supporting and helping each other by sharing their experiences and information.
Website Address
https://dev.livingmadeeasy.org.uk/about-us/youreable
Age Relevance
16+
Contact History

updated from weblink to directory entry -RC 12/9/16. Changed web address 15.5.26 AP

Last Contacted
30/11/0001
Last Updated
14/05/2026
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Young Carer

Name
Young Carer
Category
Exclude All
Yes
Short Description
Young Carer Include Programme - Children's Society's Include Programme offers information, training and support to both statutory and voluntary sectors working to support young carers.
Telephone Number
01962 711511
Website Address
https://www.childrenssociety.org.uk/youngcarer/home
County
Colden Common
Address
SO21 1WP
Age Relevance
4+, 7+, 11+, 16+
Contact History

updated from weblink to directory entry - RC 7/9/16. email added AC 13/11/23

Last Contacted
30/11/0001
Last Updated
13/11/2023
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Young Epilepsy

Name
Young Epilepsy
Category
, ,
Condition(s)
Exclude All
No
Short Description
Young Epilepsy is a charity based in Surrey, providing specialised services including a specialist school and college, medical assessment, therapy, outreach support and research.
Telephone Number
01342 832243
Website Address
https://www.youngepilepsy.org.uk/
County
Surrey
Address
RH7 6PW
Age Relevance
11+, 16+
Contact History

change to tel - consent via phone - researched by sarah - 23/3/10 - EG Updated entry - new name - from Epilepsy Action newsletter. 23/3/12 - APRefresh Project- Email 1 sent 20.9.13, email response received on 24.9.13 from Elin Gustafsson confirming all details correct- KC updated 14.10.13added details of  the connect project as informed by  Jeanenne Corderoy on 10.12.15, added counselling category and Essex location tag. Updated contact details 6.10.2020. email, phone updated AC 13/11/23

Last Contacted
15/12/2015
Last Updated
13/11/2023
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Young Lives vs Cancer (formerly CLIC Sargent)

Name
Young Lives vs Cancer (formerly CLIC Sargent)
Category
Condition(s)
Exclude All
No
Short Description
The charity that helps children and young people (0-25) and their families find the strength to face whatever cancer throws at them.
Telephone Number
0300 330 0803
Website Address
https://www.younglivesvscancer.org.uk/
Address
BS1 2NT
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to description, and email - consent via email from Naomi, updated online 14/12/09 - EGRefresh Project - Phone call 30.4.14 (AT) - New address, helpline number and email LM . Refresh 27/7/21 AP. email, website, address updated AC 13/11/23

Last Contacted
05/09/2014
Last Updated
13/11/2023
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Young Minds

Name
Young Minds
Category
,
Condition(s)
Exclude All
No
Short Description
Young Minds has a telephone service providing information and advice for anyone with concerns about the mental health of a child or young person.
Telephone Number
0808 802 5544 (parent helpline) or 020 7089 5050 (general enquiries)
Website Address
https://youngminds.org.uk/
Age Relevance
11+, 16+
Contact History

change to telephone number and description - updated by telephone + consent gained - updated online 1/3/10 - EGRefresh Project 2013 - email 1 sent 20.1.14 LMResponse received from Lauren Blenkinsop on 20.1.14. Postal address changed 5.2.14 LMAdded additional phone number and email address using info from website - RC 31/8/16. email, phone updated, linkedin added AC 13/11/23

Last Contacted
20/01/2014
Last Updated
13/11/2023
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