Albinism Fellowship

Name
Albinism Fellowship
Category
Condition(s)
Exclude All
No
Short Description
Albinism Fellowship is a voluntary organisation that provides advice and support to people with albinism, their families and professionals who help them.
Telephone Number
07946 457979
Website Address
http://www.albinism.org.uk/
Town
Ilford
Address
IG1 8NY
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project - email 1 sent 19.9.13 (BB), email 2 sent 9.1.14 (LM) - no responsePhone call 29.4.14 (AT). Information confirmed correct from website 12.6.14 LM Updated email address using information from website [email protected] to [email protected] - RC 19/07/2016. added email AC 13/9/23

Last Contacted
06/12/2014
Last Updated
13/09/2023
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Angelman UK

Name
Angelman UK
Category
Condition(s)
Exclude All
No
Short Description
Angelman UK supports families and carers with children, young people and adults with Angelman syndrome.
Telephone Number
0300 999 0102
Website Address
https://www.angelmanuk.org/
Address
CV11 9FD
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Tel and address updated 8.7.09 Sue FRefresh Project 2013 - email 1 sent 19.9.13 BB, no response so email 2 sent 16.1.14Response received on 16.1.14 from Lisa Court confirming all details correct LM Updated email address from [email protected] to [email protected] using information from the website - RC 19/07/2016

Last Contacted
16/01/2014
Last Updated
18/06/2021
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Disability Advice and Welfare Network (DAWN)

Disability Advice and Welfare Network (DAWN)
Name
Disability Advice and Welfare Network (DAWN)
Category
, ,
Condition(s)
, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Short Description
Specialising in benefits claims and appeals for clients who are of Neurodiverse development, and will support anyone with any condition.
Website Address
https://dawnsupport.co.uk/
Town
Colchester
County
Essex
Address
CO7 7UG
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Submitted by DAWN. 19/8/24

Last Updated
20/08/2024
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FASD Awareness (Foetal Alcohol Spectrum Disorders)

Name
FASD Awareness (Foetal Alcohol Spectrum Disorders)
Category
Condition(s)
Exclude All
No
Short Description
FASD Awareness - Offering support, education, training, research and information on Foetal Alcohol Spectrum Disorders (FASD).
Telephone Number
01634 566 323‬
Website Address
https://www.fasdawareness.org.uk/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Consent: Gloria 3.10.06 change to description, changed of address - consent via email from Gloria - updated online 14/12/09 - EGRefresh Project - email 1 sent 19.9.13 (BB), email 2 sent 17.1.14 (LM), no response and phone number inactive, so updated from website. Contact name, address and phone number removed, helpline number added LMremoved phone number as for NOFAS - RC 24/8/16

Last Contacted
22/05/2014
Last Updated
05/03/2021
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NOFAS-UK (National Organisation on Foetal Alcohol Syndrome)

Name
NOFAS-UK (National Organisation on Foetal Alcohol Syndrome)
Category
Condition(s)
Exclude All
No
Short Description
NOFAS-UK is committed to helping individuals with Foetal Alcohol Spectrum Disorder (FASD) and their families and carers, by offering advice, information, meetings, conferences and training.
Telephone Number
020 8458 5951
Website Address
http://www.nofas-uk.org/
Town
Ware
County
Hertfordshire
Address
SG12 9AL
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Consent given by Maggie Stapleton by telephone 29.1.08. NO CHANGE CONSENT VIA EMAIL FROM SUZANNE - 1/3/10 - EGRefresh project- email 1 sent- bounceback, email 2 sent 24.9.13 updated email- KC, autoresponse received will reply in 5 days - 25.10.13, email received on 28.10.13 from Vandana Alimchandani with new tel, address, helpline and email- KC updated 28.10.13. email, address, twitter, facebook updated AC 23/10/23

Last Contacted
28/10/2013
Last Updated
23/10/2023
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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
http://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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RTS Support Group

Name
RTS Support Group
Category
Condition(s)
Exclude All
No
Short Description
Rubinstein-Taybi Syndrome Support Group provides information and support to people affected by the syndrome and their families.
Telephone Number
01277 633915
Website Address
https://www.rtsuk.org.uk/
Town
Rickmansworth
Address
WD3 3ED
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

no change - consent via telephone - 3/3/10 - EGRefresh Project - email 1 sent 20.9.13 (BB) - no responsePhone message left 30.4.14 (AT)Information checked on website 18.6.14 - removed contact name and address LMadded address using info from website -RC 31/8/16

Last Contacted
18/06/2014
Last Updated
02/06/2023
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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 National Organisation of Rare Disorders (NORD)

Name
The National Organisation of Rare Disorders (NORD)
Category
Condition(s)
Exclude All
No
Short Description
The National Organisation of Rare Disorders (NORD) is a federation of individuals and patient organisations providing advocacy, research support, educational services, and patient assistance programs on behalf of the rare disease community.
Website Address
https://rarediseases.org/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

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

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The Prader-Willi Syndrome Association UK (PWSA UK)

Name
The Prader-Willi Syndrome Association UK (PWSA UK)
Category
Condition(s)
Exclude All
No
Short Description
The Prader-Willi Syndrome Association UK provides support and information for parents and carers, promotes knowledge and awareness of the syndrome amongst professionals and aims to improve the quality of care given to people with PWS.
Telephone Number
01332 365676
Website Address
http://www.pwsa.co.uk/
Town
Moulton Park
Address
NN3 6RX
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

changed email - consent gained via post - updated online 7/01/10 - EGRefresh Project 2013 - email 1 sent 20.9.13 BB, no response so email 2 sent 20.1.14Response received from Maggie Rowley on 20.1.14. Address changed and brackets removed from UK 5.2.14 LM. address updated, instagram added AC 6/11/23

Last Contacted
20/01/2014
Last Updated
06/11/2023
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The Williams Syndrome Foundation

Name
The Williams Syndrome Foundation
Category
Condition(s)
Exclude All
No
Short Description
The Williams Syndrome Foundation is a national charity that offers information and support to children and adults, puts families in contact with each other and funds research.
Telephone Number
020 8567 1374
Website Address
http://www.williams-syndrome.org.uk/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project 2013 - email 1 sent 20.9.13 BB, no response so email 2 sent 20.1.14Response received on 20.1.14 from Lizzie Hurst. Email changed 5.2.14 LMupdated address using info from website - RC 31/8/16

Last Contacted
20/01/2014
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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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