Groups, Forums and Organizations on Brachycephaly/Plagiocephaly

January 4, 2010

Listed in no particular order.

Plagiocephaly Care UK
A UK charity founded by parents who faced a battle to convince their GP and other doctors to take their son’s plagiocephaly seriously. They corrected his head completely, thanks to their dogged determination.

Plagiocephaly Parents
Facebook Group where “parents of kids with Plagiocelphaly and other cranio diagnosis to come together and help eachother get through this difficult time.”

Yahoo Groups
To join you must sign up for a Yahoo email (free). A huge amount of useful information on the sites.

All About Plagiocephaly – A user group referenced on the Orthamerica website. I am not sure if there is any direct link with the company, but the group seems filled with parents.

Plagiocephaly – A great user group with more than 9,000 members as of early January 2010 and an excellent section on research, with a collection of scientific papers.

A list offered on the site of vendor London Orthotics (comments are from London Orthotics)
Headstart4Babies is a UK based charity. The charity aims to raise awareness of plagiocephaly and brachycephaly and can offer parents financial support for treatment.
Independent Scottish based parent support group for parents. The site offers a full discussion forum with information and help for parents.
Independently moderated US based parent support group providing message board, information and links to further information.
Craniosynostosis and Positional Plagiocephaly Support Inc. An American charitable status support group. Started by a mother whose child had Craniosynostosis to offer support and information to other families, now offers support to families that have a child or children with Positional Plagiocephaly.
Independent support group for parents of children over 2 years of age who have Deformational Plagiocephaly but were not treated with a cranial orthosis.
Web site that provides links to a variety of Plagiocephaly web based support groups. It lists Plagiocephaly support web sites mainly US and Canada but some sites from other countries including the UK.

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