The Children’s Trust

Name
The Children’s Trust
Category
Exclude All
Yes
Short Description
The Children's Trust Tadworth is a national charity providing care, education and therapy for children with multiple disabilities and complex health needs, and also rehabilitation services to children with acquired brain injuries.
Telephone Number
01737 365000
Website Address
https://www.thechildrenstrust.org.uk/
County
Surrey
Address
KT20 5RU
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to description - consent from Lizzie D'Angelo - 25/3/10 - EGRefresh Project - Phone call made 28.3.14 (CM) - all details confirmed correct LM. instagram added AC 6/11/23

Last Contacted
04/08/2014
Last Updated
06/11/2023
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The Childrens Chronic Arthritis Association (CCAA)

Name
The Childrens Chronic Arthritis Association (CCAA)
Category
Condition(s)
Exclude All
No
Short Description
The Childrens Chronic Arthritis Association (CCAA) provides support, help and information for children with arthritis, their families and professionals involved in their care
Telephone Number
01242 511250
Website Address
https://www.ccaa.org.uk/
Address
CV11 9LR
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Consent: Caroline Cox 13.6.06 Consent via phone from Caroline - 22/3/10 - EGRefresh project- email 1 sent 20.9.13, email response received on 25.9.13 from Caroline Cox with updated service information- KC updated 10.10.13updated phone number using info from website - RC 1/8/16. phone, address updated, facebook, instagram added AC 6/11/23

Last Contacted
05/10/2020
Last Updated
06/11/2023
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The Council for Disabled Children (CDC)

Name
The Council for Disabled Children (CDC)
Category
Exclude All
Yes
Short Description
The Council for Disabled Children (CDC) is the umbrella body for the disabled children's sector in England, with links to other UK nations.
Telephone Number
020 7843 1900
Website Address
https://councilfordisabledchildren.org.uk/
Town
Hackney
Address
E8 3PN
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to website - EGRefresh Project- email 1 sent 18.9.13 email response received on 18.9.13 from Joanna Carr with updated decription and tel and adress - KC updated 31.10.13Â. address updated AC 6/11/23

Last Contacted
31/10/2013
Last Updated
06/11/2023
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The Down’s Heart Group

Name
The Down’s Heart Group
Category
Condition(s)
Exclude All
No
Short Description
The Down's Heart Group is a UK charity which offers support, information and contact with other families who have a member with Down syndrome and related heart defects.
Website Address
https://dhg.org.uk/
Address
W1A 6US
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

updated tel, fax, helpline, and description - consent via email - 24/11/09Refresh Project- email 1 sent 10.9.13, email response received on 10.9.13 from Sarah Smith stating all details correct- KC updated 18.11.13 Changed telephone number as per email from Penny Green. All other details remain unchanged. 2/6/15 AP. Email from Penny Green to update address 13/8/20 AP. phone removed AC 6/11/23

Last Contacted
13/08/2020
Last Updated
06/11/2023
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The Dyslexia Teaching Centre

Name
The Dyslexia Teaching Centre
Category
Condition(s)
Exclude All
No
Short Description
The Dyslexia Teaching Centre offers assessments, individually planned programmes of tuition, liaison with and support for schools, workshops, intensive holiday courses and educational advice.
Telephone Number
075 9221 2375
Website Address
https://www.dyslexiateachingcentre.co.uk/
Address
W8 5HN
Age Relevance
7+, 11+, 16+
Contact History

consent via phone - no change - 20/4/10 - EGRefresh Project- email 1 sent 10.9.13, email 2 sent 2.12.13Phone call made 28.3.14 (CM) - all details correct LMupdated email address using info from website - RC 17/8/16. phone updated AC 6/11/23

Last Contacted
04/08/2014
Last Updated
06/11/2023
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The Ear Foundation (Cochlear Implants)

Name
The Ear Foundation (Cochlear Implants)
Category
Condition(s)
Exclude All
No
Short Description
The Ear Foundation (Cochlear Implants) provides advice and support for the UK's young deaf children with cochlear implants and their families.
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project- email 1 SENT 17.9.13, EMAIL 2 SENT 6.12.13Phone call made 24.3.14 (CM) - email changed (consent from Rachel Lightfoot) LM. contact details removed - permanently closed AC 6/11/23

Last Contacted
27/03/2014
Last Updated
06/11/2023
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The Family Carer Support Service

Name
The Family Carer Support Service
Category
, ,
Condition(s)
Exclude All
No
Short Description
The Family Carer Support Service (FCSS) closed in February 2024.
Website Address
https://www.hft.org.uk/our-services/family-carer-support-service/
Age Relevance
16+
Contact History

KLB researched from website and discussed at IM meeting - no consent needed - published 13.7.15 by KLB. address updated AC 6/11/23. FCSS now closed February 2024. AP

Last Contacted
13/07/2015
Last Updated
22/02/2024
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The FASD Trust

Name
The FASD Trust
Category
Condition(s)
Exclude All
No
Short Description
The FASD Trust exists to raise awareness of Foetal Alcohol Spectrum Disorders and provides support, information and training for families, carers and anyone affected by FASD.
Address
OX4 1LF
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Consent given by Julia Brown by phone and email 18.3.08. May be new branch group soon in Herts to add to entry. no change - consent from Sarah Lindon - 6/3/10 - EGRefresh Project - email 1 sent 20.9.13 (BB), email 2 sent 20.1.14 (LM) - no responsePhone call 30.4.14 (AT) - number incorrectChecked information on website 18.6.14 - new address, telephone number and removed email (now via online form) LMadded additional phone number and email address - RC 24/8/16. contact details removed - no longer exists/has joined up with National FASD

Last Contacted
18/06/2014
Last Updated
06/11/2023
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The Feeding Trust

Name
The Feeding Trust
Category
Short Description
The UK charity for Paediatric Feeding Disorders (PFD) and developmental feeding differences.
Telephone Number
0121 289 3204
Website Address
https://www.feedingtrust.org/
Town
Alvechurch
County
Worcestershire
Address
B48 7LA
Age Relevance
0+, 4+, 7+, 11+
Last Updated
15/07/2025
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The Fragile X Society

Name
The Fragile X Society
Category
Condition(s)
Exclude All
No
Short Description
The Fragile X Society offers support and information for the families and professionals affected by this most common form of inherited learning disability.
Telephone Number
01371 875100
Website Address
https://www.fragilex.org.uk/
County
Essex
Address
CM6 1DA
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

changed contact name for society - consent via email from Susan - updated online 14/12/09 - EGRefresh project- email 1 20.9.13, email response received 20.9.13 from Susan Layton stating all detais correct- KC updated 23.10.13. address updated AC 6/11/23

Last Contacted
23/10/2013
Last Updated
06/11/2023
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The Haemophilia Society

Name
The Haemophilia Society
Category
Condition(s)
Exclude All
No
Short Description
The Haemophilia Society was established in 1950 and is the national charity in the UK that is working to secure the best possible care, treatment and support for individuals and families affected by a bleeding disorder.
Telephone Number
020 7939 0780
Website Address
https://haemophilia.org.uk/
Address
SE1 1XN
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

slight change to helpline times in description - const via telephone - research by Sarah - 23/3/10 - EGRefresh Project - Phone call made 30.4.14 (AT) - helpline removed (no longer exists) and entry amended to reflect this. Also removed all conditions and replaced with 'a bleeding disorder' LMupdated address using info from website - RC 25/8/16. address updated AC 6/11/23

Last Contacted
13/05/2014
Last Updated
06/11/2023
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The Hanen Centre

Name
The Hanen Centre
Category
Condition(s)
Exclude All
No
Short Description
The Hanen Centre is a Canadian charitable organisation that developed the More Than Words program.
Website Address
https://www.hanen.org/Home.aspx
Town
Toronto
County
Canada
Address
M5S 2B1
Age Relevance
0+, 4+, 7+
Contact History

added postal address, added tel and fax numbers, added address. consent via email from Naomi. Updated online 14/01/10 - EG EMAIL ADDED - 9/2/10 - EGRefresh Project - Email 1 sent 9.9.13 (BB), email 2 sent 9.1.14 (LM). No response. Telephone number does not accept incoming calls, so removed. Email 1 sent again to info@hanen.org LM All correct 30.5.14 LM

Last Contacted
02/10/2009
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The Helen Arkell Dyslexia Centre

Name
The Helen Arkell Dyslexia Centre
Category
Condition(s)
Exclude All
No
Short Description
The Helen Arkell Dyslexia Centre provides support services for people of all ages with dyslexia and other specific learning difficulties.
Telephone Number
01252 792400
Website Address
https://www.helenarkell.org.uk/
County
Surrey
Address
GU9 7DR
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project- email 1 sent 10.9.13, email response received from Margaret Simpson on 10.9.13 stating summer course updated web and address- KC updated 15.11.13. email updated, social media added AC 6/11/23

Last Contacted
15/11/2013
Last Updated
06/11/2023
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The Hideout

Name
The Hideout
Category
Exclude All
Yes
Short Description
The Hideout is a website created by Women's Aid to help children and young people to understand domestic abuse, and how to take positive Action if it's happening to you.
Website Address
https://thehideout.org.uk/
Age Relevance
4+, 7+, 11+, 16+
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The Huntington’s Disease Association

Name
The Huntington’s Disease Association
Category
Condition(s)
Exclude All
No
Short Description
The Huntington's Disease Association supports people affected by the disease and provides information and advice to professionals who support affected families.
Telephone Number
0151 331 5444
Website Address
https://www.hda.org.uk/
Address
L3 5TF
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

changed address - consent via email from Karen - updated online 14/12/09 - EG Slight change to description, tel and fax changed - consent via email from Mark - 3/3/10 - EGRefresh Project - email 1 sent 20.9.13 (BB), email 2 sent 20.1.14 (LM) - no responsePhone call 30.4.14 (AT) - number incorrectChecked information on website 18.6.14 - address and telephone number changed and fax removed LM. instagram added AC 6/11/23

Last Contacted
18/06/2014
Last Updated
06/11/2023
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The Informed Parent

Name
The Informed Parent
Category
Exclude All
Yes
Short Description
The Informed Parent aims to promote awareness and understanding about immunisation and vaccination in order to preserve the freedom of an informed choice.
Telephone Number
01903 212969
Website Address
https://www.informedparent.co.uk/
County
West Sussex
Address
BN11 2WH
Age Relevance
0+, 4+, 7+, 11+
Contact History

nochange - consent via email from Magda - EGRefresh Project - Phone call made 30.4.14 (AT) - no changes LM

Last Contacted
05/12/2014
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The International Autistic Research Organisation

Name
The International Autistic Research Organisation
Category
Condition(s)
Exclude All
No
Short Description
The International Autistic Research Organisation offers information and awareness-raising of scientific research into autism, including lectures on new research findings for people with autism.
County
Surrey
Address
CR0 7NE
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

added contact name - consent via email - Gerda - 30/11/09Refresh Project- email 1 sent 9.9.13, emai 2 sent on 27.11.13Phone call made 28.3.14 (CM) - all details confirmed correct LM. contact details removed - charity no longer exists AC 6/11/23

Last Contacted
04/01/2014
Last Updated
06/11/2023
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The Lejune Clinic For Children With Down’s Syndrome

Name
The Lejune Clinic For Children With Down’s Syndrome
Category
Condition(s)
Exclude All
No
Short Description
The Lejune Clinic For Children With Down's Syndrome specialises exclusively in the care and treatment of children with Down syndrome.
Telephone Number
07305 191428
Website Address
https://www.lejeuneclinic.com/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project - Slight change to text, advised by Eli/zabeth McKene (by phone, 24.3.14) LM/updated email and website using info online - RC 17/8/16l. email, phone updated, instagram, facebook added AC 6/11/23

Last Contacted
29/04/2014
Last Updated
06/11/2023
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The London Children’s Practice

Name
The London Children’s Practice
Category
Exclude All
Yes
Short Description
The London Children's Practice offers a fully comprehensive diagnosis, assessment and intervention service for children up to the age of 18 with special needs.
Telephone Number
020 7467 9520
Website Address
https://www.londonchildrenspractice.com/
Address
SW3 4LY
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

GOOGLEWHACK - consen gained via email from Pippa on 30/4/10 - 25/5/10 ADDED BY EGRefresh Project- email 1 sent 19.9.13 bounceback, email 2 sent to correct address (.com) email updated- 30.10.13Phone call made 28.3.14 (CM) - all correct, website added LM. website, email, address updated AC 6/11/23

Last Contacted
04/08/2014
Last Updated
06/11/2023
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The Makaton Charity

Name
The Makaton Charity
Category
,
Exclude All
Yes
Short Description
The Makaton Charity provides a national network of tutors who can offer training, advice and resources.
Telephone Number
01276 606760
Website Address
https://www.makaton.org/
County
Surrey
Address
GU16 7SG
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Change of address card received 17.7.08 Removed reference to SNAP courses 24.9.12.Change of address card received 24/6/13. Email and phone remain the same.Refresh Project- email 1 sent 9.9.13, email 2 sent on 27.11.13Information all correct - confirmed by email 27.11.13 (Chloe Butler) LM. address updated AC 6/11/23

Last Contacted
04/01/2014
Last Updated
06/11/2023
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