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Our aim is to support self-management of a condition deemed ‘incurable’ and inadequately serviced, to give better support and quality of life for a wide group of patients diagnosed with Ehlers-Danlos Type III (Hypermobility type) and possibly some Classic type BUT NOT (at outset) vascular EDS patients or any other type.
As part of this vision we would like to offer ‘Activity’ groups for children aged 5-16years. Physiotherapy, if offered, is time limited and many children are then expected to go on and join main stream sports clubs to continue their activity. Children with this condition often need to increase muscle strength to support lax joints, improve stamina in order to keep up with peers and have balance/co-ordination issues and gross motor skill delay. This means that children often lack confidence and basic skills to be ready for main stream clubs. Our aim is to provide a weekly activity group to provide consistent activity, a supportive environment to develop muscle strength, core strength and basic skills. Each child will be individually assessed and evaluated to track their progress. We also plan to link up with local sports clubs so that when the child feels ready and if they have an interest in a particular sport we plan to offer a handover, educating the club and supporting the child in the transition.
Contact a Family is a national charity for families with disabled children
We provide information, advice and support. We bring families together so they can support each other. We campaign to improve their circumstances, and for their right to be included and equal in society.
Please click the link to open to the Contact A Family website
Provides support and information for families and carers of people with Down's Syndrome and heart issues, specifically related to the heart but touching on other areas as affected by the medical problems.
We support over 13,500 disabled children, young people and their families every year by delivering over 120 services throughout England.
KIDS is unique; there is no other organisation dedicated to providing such an extensive range of services to disabled children and young people, aged 0-25 years, irrespective of their impairment or condition.
Learning Disability England brings together Housing and Support Alliance and People First England with other national bodies led by or involving work with people with learning disabilities and their families, individual people with learning disabilities, families, friends and their supporters.
East London NHS Foundation Trust (ELFT) provides mental health services for people in Bedfordshire.
The service has been commissioned by Bedfordshire Clinical Commissioning Group (BCCG), in partnership with Central Bedfordshire Council and Bedford Borough Council.
We are committed to the ongoing development of mental health and learning disability services.