Organisation for Anti-Convulsant Syndromes (OACS Charity)

Name
Organisation for Anti-Convulsant Syndromes (OACS Charity)
Category
Condition(s)
Exclude All
No
Short Description
Organisation for Anti-Convulsant Syndrome (OACS) aims to provide help and support to children and their families affected by anti-epilepsy medications taken by mothers during pregnancy.
Telephone Number
07904 200364
Website Address
https://www.oacscharity.org/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Update to description - consent gained via post from Janet. Updated online 5/2/10 -EGRefresh Project 2013 - email 1 sent 20.9.13 BB, no response so email 2 sent 20.1.14Response received on 21.1.14 from Steve Pollard. New contact name, address and telephone numbers. Updated 5.2.14 LM

Last Contacted
21/01/2014
Last Updated
01/06/2023
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OSCAR’s Paediatric Brain Tumour Charity

Name
OSCAR’s Paediatric Brain Tumour Charity
Category
,
Condition(s)
,
Short Description
Ongoing Support, Care, Awareness and Research for children affected by brain tumours.
Telephone Number
01904 373009
Website Address
https://oscarscharity.org/
Age Relevance
0+, 4+, 7+, 11+
Last Updated
02/06/2026
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PANS PANDAS UK

Name
PANS PANDAS UK
Category
Short Description
The only UK charity supporting children and families living with the neuropsychiatric conditions PANS and PANDAS.
Website Address
https://www.panspandasuk.org/
Age Relevance
4+, 7+, 11+, 16+
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Patient

Name
Patient
Category
,
Exclude All
Yes
Short Description
Patient empowers everyone to take charge of their health with trusted clinical information, written and reviewed by an extensive network of doctors and healthcare professionals.
Website Address
https://patient.info/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

updated from weblink to directory entry -RC 13/9/16

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PDA Society

Name
PDA Society
Category
Condition(s)
Exclude All
No
Short Description
PDA Society is a charity offering information, support and training about Pathological Demand Avoidance (PDA)
Website Address
https://www.pdasociety.org.uk/
Town
Sheffield
Address
S12 9EW
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change of contact name, email, removed address, updated description. consent via email from Margaret. updated online 15/12/09 - EGRefresh Project- Email 1 sent 20.9.13, email response received from Margaret Duncan on 1.10.13 confirming all details correct- KC updated spreadsheetName changed to PDA Society (from website). Email and website updated and telephone number and contact name removed LM. email updated AC 23/10/23

Last Contacted
04/03/2014
Last Updated
23/10/2023
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PECS (The Picture Exchange Communication System)

Name
PECS (The Picture Exchange Communication System)
Category
,
Condition(s)
, ,
Exclude All
No
Short Description
PECS (The Picture Exchange Communication System) is an exciting approach using pictures for teaching functional communication skills to individuals with autism and other communication difficulties.
Telephone Number
01273 609555
Website Address
https://pecs-unitedkingdom.com/
Address
BN2 4QN
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

update to web address - consent gained by email from Christy Wallis - 18/11/09Refresh Project- email 1 sent 9.9.13, email response recieved from Jo Wheeler with updated address and email- KC updated 21.11.13 updated address using info from website -RC 31/8/16. address updated AC 23/10/23

Last Contacted
21/11/2013
Last Updated
23/10/2023
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PEGS (Parental Education Growth Support)

Name
PEGS (Parental Education Growth Support)
Category
Short Description
PEGS supports parents, carers and guardians who are facing harmful, abusive or controlling behaviour from their child.
Website Address
https://www.pegsupport.co.uk/
Age Relevance
4+, 7+, 11+, 16+
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People First

Name
People First
Category
Condition(s)
Exclude All
No
Short Description
People First is a national self-advocacy organisation run by and for people with learning difficulties.
Telephone Number
0207 274 5484
Website Address
https://peoplefirstltd.com/
Town
London
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

added to directory using information from their website - RC 28/7/17checked information and added tags. Published - BB 07.09.17. facebook, twitter, youtube added AC 23/10/23

Last Updated
23/10/2023
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PINNT

Name
PINNT
Category
, ,
Condition(s)
Exclude All
No
Short Description
PINNT offers access to a support network for adults receiving artificial nutrition. They also help families to make contact with others in their area or with the same condition.
Telephone Number
0203 004 6193
Website Address
https://pinnt.com/Home.aspx
County
Dorset
Address
BH23 2XS
Age Relevance
16+
Contact History

Info taken from website PH 14/7/16added phone number using info from facebook page -RC 31/8/16

Last Contacted
14/07/2016
Last Updated
22/05/2020
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Potential Plus UK (formerly National Association for Gifted Children)

Name
Potential Plus UK (formerly National Association for Gifted Children)
Category
Condition(s)
Exclude All
No
Short Description
An independent charity supporting children with high learning potential (gifted and talented) by working with families, schools and professionals.
Telephone Number
01908 646433
Website Address
www.potentialplusuk.org
County
Buckinghamshire
Address
MK7 6AA
Age Relevance
4+, 7+, 11+, 16+
Contact History

Consent given by Julia Cloke by phone - AR 14/6/10Refresh Project - email 1 sent 20.9.13 (BB), email 2 sent 17.1.4 (LM) - no responsePhone call made 30.4.14 (AT) - message informed of name change to Potential Plus.Information checked on website 18.6.14 - weba address changed, fax removed and email changed LMupdated phone number and removed fax using info from website - RC 25/8/16. Email update from Holly change to address 29.11.19 AP
Email with update of address - old address: Room 5, The Mansion, Bletchley Park, MK3 6EB New Address: Potential Plus UK, The Open University, Vaughan Harley Building Ground Floor, Walton Hall, Milton Keynes, MK7 6AA

Last Contacted
19/09/2023
Last Updated
19/09/2023
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Preparing for Adulthood Programme

Name
Preparing for Adulthood Programme
Category
,
Exclude All
Yes
Short Description
The Preparing for Adulthood programme was funded by Department for Education (DfE) to provide expertise and support to local authorities and their partners to embed preparing for adulthood from the earliest years.
Telephone Number
01225 255 268
Website Address
https://www.ndti.org.uk/programme/preparing-for-adulthood/
County
Bath
Address
BA1 1HE
Age Relevance
16+
Contact History

updated from weblink to directory entry -RC 13/9/16Changed phone number from Facebook post update. AP 31/3/17. Changed web address and updated description 9/9/22 AP. phone, email, address updated AC 23/10/23. Updated listing 15.5.26 AP

Last Contacted
31/03/2017
Last Updated
15/05/2026
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RAD (The Royal Association for Deaf People)

Name
RAD (The Royal Association for Deaf People)
Category
Condition(s)
Exclude All
No
Short Description
RAD promotes equality for deaf people from 0 to 19 years and their families through the provision of accessible services.
Telephone Number
0300 688 2525
Website Address
https://royaldeaf.org.uk/
Town
Nesfield Road
County
Essex
Address
CO4 3ZL
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to numbers - 31/3/10 - EG Change to address and description, consent via email from Lorna Bareham, changed 10/1/12 - EGRefresh Project- email 1 sent 13.9.13, Updated by KC on 13.9.13 added age range and location details confirmed by Aaron Ockendonon 13.9.13 corrected address - RC 26/8/16. phone, address, facebook updated, instagram added AC 23/10/23

Last Contacted
12/06/2013
Last Updated
23/10/2023
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Rainbow Trust Children’s Charity

Name
Rainbow Trust Children’s Charity
Category
,
Condition(s)
Exclude All
No
Short Description
Rainbow Trust Children's Charity provides family centred care for children with life-threatening or terminal illness. Practical and emotional support is offered within the family home. Rainbow Trust also offers a 24 hour crisis support service.
Telephone Number
01206 234977
Website Address
https://rainbowtrust.org.uk/
Town
Marks Tey
County
Essex
Address
CO6 1HS
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to address, telephone and fax and description - consent via telephone - updated online 1/3/10 - EG Changed category to SHORT BREAKS 14/6/10Refresh Project - Phone call made 25.4.14 (AT) - all details still correct LM

Last Contacted
30/04/2014
Last Updated
02/06/2023
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Reach

Name
Reach
Category
Condition(s)
Exclude All
No
Short Description
Reach is the association for children with hand or arm deficiency and it offers support, contacts and advice.
Telephone Number
0300 365 0078
Website Address
https://reach.org.uk/
Address
PL19 0BN
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project 2013 - email 1 sent 20.9.13 BB, no response so second email sent 9.1.14Response received on 9.1.14 from Jo. Address changed, all other details confirmed correct LM

Last Contacted
01/09/2014
Last Updated
02/06/2023
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Resources for Autism

Name
Resources for Autism
Category
Condition(s)
Exclude All
No
Short Description
Resources for Autism is a charity in London, providing practical services for children and adults with a diagnosis of autism and for those who love and care for them.
Telephone Number
020 8458 3259
Website Address
https://resourcesforautism.org.uk/
Address
NW11 6AB
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh project- email 1 sent 9.9.13, reminder email sent 27.11.13Phone call made 14.3.14 (CM) - details all correct (Liza Dresner) LM. instagram, linkedin, youtube added AC 23/10/23

Last Contacted
18/03/2014
Last Updated
23/10/2023
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Respond

Name
Respond
Category
Exclude All
Yes
Short Description
Respond offers therapeutic work with adults and children with learning difficulties who have experienced abuse or trauma.
Telephone Number
020 7383 0700
Website Address
https://www.respond.org.uk/
Address
WC1X 9DE
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Ammended following email from Elizabeth Holmes 27.4.09 Sue F 10.06.09 Changed telephone number - consent via email from Amanda, 14/12/09 - EGRefresh Project - email 1 sent 9.1.14 LM. No response. Phone call straight to voice message.Updated from website - telephone number changed, helpline added, email address added and entry amended 2.6.14 LM 

Last Contacted
12/09/2001
Last Updated
02/06/2023
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Rethink Mental Illness

Name
Rethink Mental Illness
Category
Condition(s)
Exclude All
No
Short Description
Charity based in England leading the way to a better life for people living with mental illness.
Telephone Number
0121 522 7007 or 0808 801 0525 (helpline)
Website Address
https://www.rethink.org/
Address
SE1 7TP
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to address - consent gained via email from Gretchen - updated online 15/12/09 - EGRefresh Project 2013 - email 1 sent 20.9.13 BB, no response so email 2 sent 20.1.14Response received on 23.1.14 from Oliver Outhwaite. All details correct apart from telephone number. Updated 6.2.14 LMadded additional phone number using info from website -RC 26/8/16

Last Contacted
23/01/2014
Last Updated
02/06/2023
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Rett UK

Name
Rett UK
Category
Condition(s)
Exclude All
No
Short Description
Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families.
Telephone Number
01582 798911
Website Address
https://www.rettuk.org/
County
Bedfordshire
Address
LU1 3BS
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

changes to: address, tel, fax, email and web. consent via phone - 29/3/10 - EGRefresh Project - Phone call made 30.4.14 (AT). Name of organisation changed and email LMadded additional phone number and email address using info online -RC 31/8/16corrected mistake in description - RC 16/8/17

Last Contacted
05/12/2014
Last Updated
02/06/2023
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Rise Above

Name
Rise Above
Category
Exclude All
Yes
Short Description
Rise Above is where you will find interesting and useful stuff from the web and beyond to get us all talking about the things that matter to us. You'll find inspiring and useful stories, videos, games and advice.
Website Address
https://riseabove.org.uk/
Age Relevance
11+, 16+
Contact History

updated from weblink to directory entry -RC 8/9/16

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RNC

Name
RNC
Category
Condition(s)
Exclude All
No
Short Description
A specialist residential college for young people with visual impairment
Telephone Number
01432 265 725 or 01432 376621
Website Address
https://www.rnc.ac.uk/
Address
HR1 1DT
Age Relevance
16+
Contact History

rEFRESH PROJECT- EMAIL 1 SENT 17.9.13, EMAIL 2 SENT 6.12.13. instagram, linkedin added AC 24/10/23

Last Contacted
12/06/2013
Last Updated
24/10/2023
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