Archives: Down Syndrome

Candles – Down Syndrome Support Group

Candles – Down Syndrome Support Group

Name

Category

Leisure Time & Fitness, Local Advice & Support

Condition(s)

Exclude All

Short Description

A parent led support group for families with Down Syndrome in the Colchester, Tendring, Babergh, Maldon and Braintree districts.

Telephone Number

07890 071526

Town

Colchester

Age Relevance

0+, 4+, 7+, 11+

Contact History

Website form submitted 13/12/22 Charlotte Larcom

Last Updated

14/01/2022

Carers Unite

Name

Carers Unite

Category

Local Advice & Support

Condition(s)

Angelman Syndrome, Aquired Brain Injury, Autism Spectrum Disorders, Brain Injury, Cerebral Palsy, Challenging Behaviour, Deafblind, Down Syndrome, Epilepsy, Fragile X, Genetic Disorders, Learning Disability, Sensory Processing

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

Cerebra

Name

Cerebra

Category

Autism Spectrum Disorders, Cerebral Palsy, Down Syndrome

Condition(s)

Exclude All

Short Description

Cerebra is a national charity dedicated to helping families with children with brain conditions discover a better life together.

Telephone Number

01267 244200

Website Address

http://www.cerebra.org.uk/

Town

Carmarthen

County

Wales

Address

SA31 3LW

Age Relevance

0+, 4+, 7+, 11+

Contact History

Refresh Project 2013 - email 1 sent 19.9.13 BB, no response so email 2 sent 16.1.14Response received on 16.1.14 from Sandi Llewellyn. All details confirmed correct LMFurther response from Kayleigh Wilson on 16.1.14 informing of change of address LMKLB updated entry to included info on the helpline, holiday home, sensory, lending library, info taken from the website. Equipment and financial support and holiday tags added.- 3.9.15added additional email address - RC 8/8/16. Refresh 27/8/21 AP

Last Contacted

09/03/2015

Last Updated

27/08/2021

Colchester United – Football in the Community Disability Sport

Colchester United – Football in the Community Disability Sport

Name

Category

Leisure Time & Fitness

Condition(s)

ADD / ADHD, Anxiety / Mental Health, Autism Spectrum Disorders, Brain & Spine Disorders, Cerebral Palsy, Challenging Behaviour, Down Syndrome, Growth Disorders, Learning Disability, Mental Health, Multiple Sclerosis, Muscular Dystrophy, Physical Difficulties, Spina Bifida &/or Hydrocephalus

Exclude All

Yes

Short Description

Colchester United Football in the Community have launched two disability programmes to support children with additional needs.

Telephone Number

07791313232

Website Address

https://www.cu-fc.com/cucf/our-programmes/health-wellbeing/disability/

County

Essex

Address

CO2 9BG

Age Relevance

7+, 11+

Contact History

website, email updated AC 2/10/23

Last Updated

02/10/2023

Into Adulthood, Leisure Time & Fitness

Dance 21

Name

Dance 21

Category

Condition(s)

Exclude All

Short Description

Dance 21 is a dance group based in Chelmsford for children with Down syndrome and their siblings aged 5 and over.

Telephone Number

01245 259742

Website Address

http://dance21.co.uk/

Age Relevance

4+, 7+, 11+, 16+

Contact History

Added website 6.2.08 Email from Mary to change email address 20.2.08Refresh Project- email 1 sent 24.9.13, email response received from Maryon 1.11.13 with description change to add in two groups - contact name changed and tel - KC updated 4/11/13Â

Last Contacted

11/04/2013

Last Updated

12/06/2020

Disability Advice and Welfare Network (DAWN)

Disability Advice and Welfare Network (DAWN)

Name

Category

Into Adulthood, Money Matters, National Advice & Support

Condition(s)

ADD / ADHD, Albinism, Allergy, Angelman Syndrome, Anxiety / Mental Health, Aquired Brain Injury, Arthritis, Asthma / Lung Condition, Asthma/Lung Conditions, Autism Spectrum Disorders, Auto Immune, Autoimmune, Bladder and Bowel, Blood Conditions, Brain Injury, Brittle Bones, Cancer, Cerebral Palsy, Challenging Behaviour, Coeliac Disease, Cystic Fibrosis, Deafblind, Diabetes, Disfigurement, Down Syndrome, Dyslexia, Dyspraxia, Eating Disorders, Eczema, Epilepsy, Erbs Palsy, Fragile X, Gastrointestinal Disorders, Gender Identity, Genetic Disorders, Gifted Children, Growth Disorders, Handwriting Difficulties, Hearing Impairment, Heart Disorders, Hemiplegia, Incontinence, Kidney Disease, Learning Disability, Life Threatening Conditions, Liver Disease, Meningitis, Mental Health, Multiple Births, Multiple Sclerosis, Muscular Dystrophy, Myalgic Encephalomyelitis, Physical Difficulties, Rare Disorders / Syndromes, Sensory Processing, Stroke, Tourette Syndrome, Tracheostomy, Tremor, Visual Impairment

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

Down’s Syndrome Association

Down’s Syndrome Association

Name

Category

Condition(s)

https://www.downs-syndrome.org.uk/

Exclude All

Short Description

Supporting people with Down's syndrome throughout their lives.

Telephone Number

0333 1212 300

Website Address

Address

TW11 9PS

Age Relevance

0+, 4+, 7+, 11+, 16+

Contact History

Refresh Project- email 1 sent 10.9.13, email response received on 11.9.13 from Vanda Ridley with new telephone number- KC updated 11.11.13

Last Contacted

11/11/2013

Last Updated

10/12/2021

Down’s Syndrome Research Foundation

Down’s Syndrome Research Foundation

Name

Category

Condition(s)

Exclude All

Short Description

The only UK charity solely dedicated to medical research to help everyone with Trisomy 21 (Down's syndrome).

Telephone Number

01892 711121

Website Address

http://www.dsrf-uk.org/

Town

Tunbridge Wells

Address

TN2 9WJ

Age Relevance

0+, 4+, 7+, 11+, 16+

Contact History

slight change to description, change of website - consent via phone from Director, updated online 20/01/10 - EGRefresh Project - Email 1 sent 10.9.13 (BB), email 2 sent 28.11.13. Telephone number inactive. Info checked on website - address and email changed, telephone number removed, name changed from 'Down's' to 'Down' LM

Last Contacted

22/05/2014

Last Updated

10/12/2021

Down Syndrome Education International

Down Syndrome Education International

Name

Category

Education & Learning

Condition(s)

https://www.dseinternational.org/en-gb/

Exclude All

Short Description

An international charity that supports scientific research and delivers evidence-based advice and information to improve outcomes for children with Down syndrome worldwide.

Telephone Number

0330 043 0021

Website Address

County

Cumbria

Address

LA6 2DY

Age Relevance

0+, 4+, 7+, 11+, 16+

Contact History

Changed Down syndrome Educational Trust to Down Syndrome Education International Changed 4.3.09 Sue Furley Changed from 'downsed' to 'they'Refresh Project- email 1 sent 10.9.13, email 2 sent 28.11.13Updated from website - new address, tel number, fax and email LM

Last Contacted

28/11/2013

Last Updated

24/11/2020

Down Syndrome Education Online

Down Syndrome Education Online

Name

Category

Condition(s)

https://www.down-syndrome.org/en-gb/

Exclude All

Short Description

Working to improve early intervention and education for children with Down syndrome around the world.

Telephone Number

0300 330 0735

Website Address

County

Cumbria

Address

LA6 2DY

Age Relevance

0+, 4+, 7+, 11+, 16+

Last Updated

10/12/2021

Down Syndrome Extra 21 (formerly Down’s Syndrome Association N.E. Thames Branch)

Down Syndrome Extra 21 (formerly Down’s Syndrome Association N.E. Thames Branch)

Name

Category

Local Advice & Support

Condition(s)

http://www.extra21.org.uk/

Exclude All

Short Description

Down Syndrome Extra 21 works throughout Essex supporting people with Down syndrome and their families. They have produced the booklet 'Just Kids' to help new parents of children with Down syndrome and the professionals working with them.

Telephone Number

01277 365618

Website Address

County

Essex

Address

CM5 9BU

Age Relevance

0+, 4+, 7+, 11+, 16+

Contact History

Added website 5.1.07 Description updated: consent via email from Deidre - updated 14/12/09 - EGRefresh project- email 1 sent 10.9.13, email response received on 10.9.13 from Deidre Clement stating all details correct- KC updated 18.11.13

Last Contacted

18/11/2013

Down Syndrome Medical Interest Group

Down Syndrome Medical Interest Group

Name

Category

Condition(s)

https://www.dsmig.org.uk/

Exclude All

Short Description

DSMIG is a network of healthcare professionals whose aim is to promote best practice in healthcare of people with Down syndrome by sharing information.

Telephone Number

0333 1212 300

Website Address

Town

Teddington

County

Middlesex

Address

TW11 9PS

Age Relevance

0+, 4+, 7+, 11+, 16+

Contact History

Refresh Project - online resource added as recommended by Dr Jayakumar LMadded email, phone number and address using info from website - RC 17/8/16

Last Contacted

13/05/2014

Last Updated

10/12/2021

ADD / ADHD, Anxiety / Mental Health, Autism Spectrum Disorders, Challenging Behaviour, Down Syndrome, Dyslexia, Dyspraxia, Gifted Children, Handwriting Difficulties, Learning Disability, Mental Health, Physical Difficulties, Sensory Processing, Speech & Language / communication, Visual Impairment

Hannah Morris

Name

Hannah Morris

Category

Education & Learning

Condition(s)

Short Description

Educational Psychologist - Independent Practitioner

Telephone Number

07540 529661

Website Address

https://www.edpsych4kids.com

County

Based in Herts, also covering parts of Essex, Beds and NW London

Age Relevance

4+, 7+, 11+

Contact History

Removed Facebook. Not currently taking on new clients but website active. 1/12/2020 AP

Last Updated

01/12/2020

Hawk Farm Resort and Day Experience

Hawk Farm Resort and Day Experience

Name

Category

Into Adulthood, Respite & Breaks Away

Condition(s)

Autism Spectrum Disorders, Down Syndrome, Learning Disability

Short Description

Respite resort and day experience sessions for young adults with learning disabilities.

Telephone Number

07391 079312

Website Address

https://hawkfarmresort.co.uk/

Town

Clacton-on-Sea

County

Essex

Address

CO16 9AF

Age Relevance

16+

Last Updated

24/10/2023

Karen Gaffney Foundation

Name

Karen Gaffney Foundation

Category

Down Syndrome, Learning Disability

Condition(s)

Exclude All

Short Description

The Karen Gaffney Foundation is dedicated to championing the journey to full inclusion for people with Down syndrome or other developmental disabilities.

Website Address

http://www.karengaffneyfoundation.com/

Age Relevance

0+, 4+, 7+, 11+, 16+

Contact History

updated from weblink to directory entry -RC 7/9/16. facebook, twitter added AC 16/10/23

Last Updated

16/10/2023

Autism Spectrum Disorders, Down Syndrome, Learning Disability

Learning for Life

Name

Learning for Life

Category

Education & Learning

Condition(s)

Short Description

Learning for Life focuses on the Relationships and Sexual Education curriculum and offers free resources for young people with Down’s syndrome and other SEN.

Telephone Number

0300 102 4553

Website Address

www.learnandthrive.org.uk/learning-for-life

Age Relevance

7+, 11+, 16+

Last Updated

09/04/2024