Alex TLC

Name
Alex TLC
Category
Condition(s)
Exclude All
Yes
Short Description
Alex - The Leukodystrophy Charity is a patient support group for patients and families affected by a genetic leukodystrophy. They provide emotional and financial support to patients and families including a grants programme that helps families cover vital support costs.
Telephone Number
020 7701 4388
Website Address
http://www.alextlc.org
Address
SE15 5EB
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project - new entry published 1.7.14 (consent from Minesh Gokal) LMupdated phone number using info from website - RC 24/8/16. Martina Wilson updated entry via email 31.5.19. AP.

Last Contacted
31/05/2019
Last Updated
29/01/2021
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Carers Unite

Carers Unite
Name
Carers Unite
Category
Condition(s)
, , , , , , , , , , , ,
Short Description
Support groups at Southend Mencap for parent carers of children and young people, or young adults with additional needs.
Telephone Number
07581 388667
Town
Southend-on-Sea
County
Essex
Address
SS1 1PG
Age Relevance
0+, 4+, 7+, 11+, 16+
Last Updated
26/10/2023
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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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Ehlers-Danlos Support UK

Name
Ehlers-Danlos Support UK
Category
Condition(s)
Exclude All
No
Short Description
EDS UK is the only UK charity to offer support to people touched by all types of Ehlers-Danlos syndrome.
Telephone Number
0800 907 8518
Website Address
https://www.ehlers-danlos.org/
Address
WD6 1QQ
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Consent via email from Libby - nothing to change - 14/4/10 - EGRefresh Project - email 1 sent 19.9.13 (BB), email 2 sent 17.1.14 (LM). No response.Phone call 30.4.14 (AT) - left message.Updated information from website 17.6.14. Changed address, telephone number. Removed contact name and email, and added helpline. Changed 'Group' to 'UK' in title LMadded email address using info from website - RC 24/08/2016

Last Contacted
04/10/2014
Last Updated
10/12/2021
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Gene People UK

Name
Gene People UK
Category
Condition(s)
Exclude All
No
Short Description
The genetic conditions support network.
Telephone Number
0800 987 8987
Website Address
https://genepeople.org.uk/
Town
Epsom
Address
KT17 1HQ
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

klb EMAILED IN 2015- HAD NO REPONSE, USED WEBSITE INFO TO PUBLISH ENTRY -8.4.16added address info - RC 24/8/16. email updated AC 9/10/23

Last Contacted
04/08/2016
Last Updated
09/10/2023
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Genetic Alliance UK

Name
Genetic Alliance UK
Category
Condition(s)
Exclude All
No
Short Description
Supporting everyone affected by genetic, rare and undiagnosed conditions.
Telephone Number
0300 124 0441
Website Address
http://www.geneticalliance.org.uk/
Address
E17 6DS
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

no change - 23/3/10 - EGRefresh Project- email 1 sent 19.9.13, email response received on 19.9.13 from Julian Walker with new name Genetic Alliance UK rather than Genetic Interest Group new website and email- KC updated 28.10.13 

Last Contacted
28/10/2013
Last Updated
25/08/2022
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Metabolic Support UK (formerly Climb)

Name
Metabolic Support UK (formerly Climb)
Category
Condition(s)
Exclude All
No
Short Description
The leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide.
Telephone Number
0845 241 2173
Website Address
https://www.metabolicsupportuk.org/
Town
Wrexham
County
Wales
Address
LL13 7YP
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to telephone - 29/3/10 - EGrEFRESH pROJECT- EMAIL 1 SENTTO INFO@ 19.9.13- BOUNCEBACK- EMAIL 2 SENT ON 28.10.13 TO EXEC@ , phoned and spoke to Fiona who gave address [email protected] forwarded to this address on  30.10.13, Fiona responded stating all details correct, new fax no.- KC updated 30.10.13Phone number changed 13.2.14 LMupdated email address using info from website - RC 31/8/16. Refresh - changed name from Climb - 27/8/21 AP. email, phone updated, twitter removed AC 16/10/23

Last Contacted
30/10/2013
Last Updated
16/10/2023
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SLT Consultancy

Name
SLT Consultancy
Category
Condition(s)
,
Exclude All
Yes
Short Description
SLT Consultancy is a private Speech and Language Therapy service for both children and adults across Essex.
Telephone Number
07871 985354
Website Address
http://www.sltconsultancy.co.uk/
County
Essex
Address
CM13 2AZ
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Changed Email address upon request
Refresh Project - New entry added following What Next? event. Consent from Laura Dawson LM. Updated description following email from Scott Lincoln 14/6/2019 AP. address updated AC 30/10/23

Last Contacted
14/06/2019
Last Updated
30/10/2023
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SOFT UK (Support Organisation for Trisomy 13/18 & Related Disorders)

Name
SOFT UK (Support Organisation for Trisomy 13/18 & Related Disorders)
Category
Condition(s)
Exclude All
No
Short Description
SOFT UK (Support Organisation for Trisomy 13/18 & Related Disorders) welcomes families affected by related disorders and rare conditions for whom no other organisation exists.
Telephone Number
0300 102 7638
Website Address
http://www.soft.org.uk/
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

Refresh Project - Phone call made 30.4.14 (AT) all info up to date LM. phone, instagram added AC 30/10/23

Last Contacted
05/12/2014
Last Updated
30/10/2023
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SWAN (Syndromes Without A Name) UK

Name
SWAN (Syndromes Without A Name) UK
Category
Condition(s)
Exclude All
No
Short Description
SWAN offers support and information to families of children with undiagnosed genetic disorders. SWAN offers resources, newsletters and leaflets that are available to view on the website.
Telephone Number
0207 704 3141
Website Address
http://www.undiagnosed.org.uk/
Town
436 Essex Road
Address
N1 3QP
Age Relevance
0+, 4+, 7+, 11+
Contact History

Gained consent via email from Lauren Roberts on 20.5.13 added on 3.6.13 by KCRefresh project  - Phone call 30.4.14 (AT) - no change LMUpdated email address using info from website - RC 17/08/2016

Last Contacted
05/12/2014
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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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Tuberous Sclerosis Association

Name
Tuberous Sclerosis Association
Category
Condition(s)
Exclude All
No
Short Description
Tuberous Sclerosis Association supports individuals, promotes awareness and seeks the causes and best possible management of Tuberous Sclerosis.
Telephone Number
0808 801 0700
Website Address
http://www.tuberous-sclerosis.org/
Town
Epsom
County
Surrey
Address
KT17 1HQ
Age Relevance
0+, 4+, 7+, 11+, 16+
Contact History

change to email - consent via fax - received 2/3/10 - updted 3/3/10 - EG change to el, email and address - consent via email from Chris Johnson - 14/6/11 - EGRefresh project- email 1 sent 20.9.13, email response received from Christian Johnson stating that Christian no longer works there- email forwarded to Andreas.Woreth on 23.10.13No response, and phone number does not connect. Checked website, no address, but site still active, so removed all details other than website and description 20.6.14 LMupdated email address and address using info from website -RC 31/8/16. address updated, phone added AC 13/11/23

Last Contacted
20/06/2014
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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