You can also find blogs of interest here.
- Down’s Syndrome Association
Our national Down’s syndrome charity – this should be the first port of call to all new parents and is also a great source of all the information you could possibly need on Down’s syndrome. The DSA holds conferences and “family weekends” which are fantastic if you can make them.Some early suggested reading from the DSA: Early Support: Information for Parents (pdf)
- Down’s Syndrome Education International
DSEI has recently undergone some changes and now no longer provides Early Intervention Programmes or One-On-One sessions for preschool age children. DSEI will now be concentrating mainly on school integration and research. The research that DSEI does is absolutely invaluable and there are so many teaching tools and resources on offer that it is worth giving them a call to discuss your childs needs so that they can point you in the right direction in terms of development and activities. One of the most well known teaching tools if the “See and Learn” programme. Read about it here.Also, the suggested info from DSEI for new parents is: Down Syndrome The First 18 Months (Will Schermerhorn) [DVD]Based in Southampton, DSEI will also be holding some parent support seminars. All the dates will be published on their website and also in the FoD calendar.
Our mission is to undertake research which will help to identify and develop interventions which alleviate the medical, physical, developmental and cognitive conditions associated with Trisomy 21 which are collectively described as Down’s syndrome.
Cerebra is a unique charity set up to help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers.It lists the support services available to make life easier for children with neurological condition – and their families. Worth a browse. A few members have accessed the services of Cerebra and will be willing to share their experiences on the FoD Forums.
- Down’s Heart Group
A charity offering support and information relating to heart conditions associated with Down’s Syndrome.We hope you find the content useful, however, this is only part of the specialised help available to parents and professionals, including one-on-one support, telehpone support & a newsletter.
- Down’s Syndrome Scotland
“Down’s Syndrome Scotland works to improve the quality of life for everyone in Scotland with Down’s syndrome and their families”. If you live in Scotland, this is the charity that you should get in touch with in the first instance.
- Home Start
This is not specifically a Down’s syndrome charity, but offers local support to families who might need a bit of extra help. As long as you have at least on child under 5 years old, they might be able to help. If you need a bit of help or support looking after the kids when things get tough, then phone them They might (or might not) cover your area. A representative will come and see you to assess your need and then volounteers come and provide assistance. This might be in the form of playing with your kids in the house while you get on with something else or even take the kids to the park!! Don’t let things get on top of you when there are charities like this out there to help.
- Contact A Family
Contact a Family is a UK charity for families with disabled children. They offer information on specific conditions and rare disorders. Meet more families who have kids with Down’s syndrome in your area!!
- The Family Fund
For financial help – The Family Fund give grants to families raising disabled and seriously ill children aged 17 and under. Families who have children with Down’s syndrome can benefit from grants for holidays or even white good for the home.
- New Life Charity
Providing equipment to help individual children, nurse support services, medical research, awareness and campaigning. Read some “real family stories” on the website.
Offers free and independent advice on Local Education Authorities’ legal duties to assess and provide for children with special educational needs. An essential resource when children with Down’s syndrome are going through the Statement process or entering school.
This website offers help and advice to families who’s children have Hirschprungs disease.
Even though this is not specifically a Down’s syndrome support charity, many parents find the information, advice and support offered by the NDCS invaluable.
Set up by a mother of a child who has Down’s syndrome and is tube fed, this is a facebook support group for parents who want advice and help from other parents regarding all aspects of tube feeding. Please note this is not an official or medically backed group, but a parental support group only.
I CAN has launched a new service to provide expert information to parents and practitioners about speech, language and communication. I CAN’s speech and language therapists can help – whether you would like to check communication milsteones or find out how to support a child with a known speech, language and communication.
- Paediatrician in the US and also has a daughter with DS
- Parent Resources Down Syndrome Medical Interest Group
- Website for women pregnant with a confirmed baby with Down’s syndrome
- Supported living and age appropriate opportunities for adults with a learning disability
- Online Occupational Therapist at the Down Syndrome Centre (Ireland)
- Home Educating your child with Down’s syndrome – support group
- The Pregnancy Book (for confirmed prenatal diagnosis, this is a brilliant book, but please note it is an American publication, so not all of it relevant to the NHS way of doing things)
- Parasol – PARASOL is working to promote and provide inclusive play, social and recreational opportunities for disabled and non-disabled children and young people in Oxford City.
- Up & Down’s Southwest – Down Syndrome support organisation based in Somerset with a membership currently including families from BANES, Cornwall, Devon, Dorset, Hampshire, Herefordshire, Glos, Monmouthshire and Wiltshire and South Wales.