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Community Miscellaneous in Community . 2 months ago
The Restricted Growth Association (RGA) is a UK charity that supports people with dwarfism (restricted growth).
The RGA was formed in 1970 by Charles Pocock, Martin Nelson and other individuals in the UK wanting to provide a support network for people with restricted growth (dwarfism). Initially known as the Association into Research of Restricted Growth, the charity aims to support all individuals and their families affected by skeletal dysplasia leading to short stature.
There are many different forms of dwarfism caused by genetic conditions, but the most common form of disproportionate short stature, causing about 70% of cases, is achondroplasia.
There are over 200 known genetic conditions that can lead to short stature (dwarfism). 80% of children born with one of these conditions are born to parents with no previous family history of genetic skeletal dysplasia. The RGA aims to provide support from the first diagnosis and right through the life of the individual.
The RGA's aims are to:
In 2007, the RGA, supported by the Big Lottery Fund, commissioned a report into ‘Living with Restricted Growth’. The full report can be downloaded from the RGA website. The report covers people from all over the UK and whilst many participants have achondroplasia, there were also participants with many other conditions such as pseudoachondroplasa, diastrophic dysplasia, spondyloepiphyseal dysplasia and hypochondroplasia.
The RGA can provide links to Red Book inserts for children with achondroplasia and height charts are available online. Children with achondroplasia and other skeletal dysplasia's should not be monitored using the standard growth and development charts contained within the ‘Red Book’.
The RGA welcomes members who are under 4'10" as well as their families and other individuals and organisations that have a genuine interest in dwarfism. Events are held regularly around the country.
Posted on 04 Nov 2024, this text provides information on Community related to Miscellaneous in Community. Please note that while accuracy is prioritized, the data presented might not be entirely correct or up-to-date. This information is offered for general knowledge and informational purposes only, and should not be considered as a substitute for professional advice.
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