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Brought to you by: "baby's first test", State Hygienic Laboratory at the University of Iowa and School of Journalism & Mass Communication at the University of Iowa.

 

Positional Plagiocephaly

About the group: "This group was created to bring together parents and families of children with Positional Plagiocephaly, along with the support of several medical professionals. "Plagio" is a deformation of the skull caused by any consistent external pressure such as inutero constraint, back sleeping, etc, or encouraged by torticollis, prematurity, etc. Join us for support, information, insurance help, photos, and some old fashioned friendly chit-chat!"

Discussion site: health.groups.yahoo.com/group/plagiocephaly/

Website: https://www.facebook.com/groups/plagiocephaly/files/

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Plagiocefalia posicional

Descripcin: "Pgina destinada a compartir informacin sobre los tratamientos con ortesis craneal existentes para solucionar la plagiocefalia y otras deformaciones posturales que afectan a los nios. Est dirigida, especialmente, a los padres y madres latinoamericanos en cuyas regiones no existe tratamiento y deben trasladarse a otros pases a buscarlo..."

Inicio del grupo: es.groups.yahoo.com/group/plagiocefalia_posicional/

Enlace relacionado:

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Untreated Positional Plagiocephaly

About the group: "Parents of older children with Positional Plagiocephaly that was never treated with a Cranial device. A support group for parents of children 2 years and older dealing with the effects of Positional Plagiocephaly."

Discussion site: health.groups.yahoo.com/group/olderplag/

Website:

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Plagiocefalia

Descripcin: Pgina destinada a las familias que buscan una solucin para el problema de las deformidades craneales de los recin nacidos y lactantes, en especial la plagiocefalia posicional. Dos de los principales objetivos del grupo son conseguir que desde recin nacidos los bebs sigan pautas de prevencin adecuadas y empezar el tratamiento ortopdico lo antes posible cuando dichas pautas de reposicin y ejercicios fracasan.

Los especialistas en la materia constatan que la mejor respuesta al tratamiento activo con banda ortopdica tiene lugar entre los 3 y los 9 meses de edad y que no tratar activamente la plagiocefalia ms all de estas edades puede comportar una deformidad permanente. A partir de los 2 aos de edad slo es efectiva la ciruga.

Pgina esponsorizada por los centros espaoles de Cranial Technologies Inc. la empresa fabricante de DOC band, lder mundial en su campo.

Los consejos y los comentarios de los miembros del grupo no traducen necesariamente la opinin de los promotores ni de los moderadores."

Inicio del grupo: es.groups.yahoo.com/group/Plagiocefalia/

Enlace relacionado: www.plagiocefalia.com

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Plagio UK

About the group: "Plagio UK is the UK's only independent plagiocephaly support group. We have helpful information on repositioning techniques, cranial remoulding treatment and UK helmet/band suppliers. We have several hundred members and a very active online discussion board where you can get friendly advice and support from other parents."

Discussion site:

Website: groups.msn.com/PlagioUK

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Plagiocephaly Care UK

About the group: "Our main purpose is to reach out to parents in their hour of need. We remember only to well how frightening it is when you realise there is something wrong with your baby's head. you can chat to lots of other parents experiencing the same as yourself and look at lots of encouraging pictures. there is nothing we can not and will not help you with!! we are all here to help each other...."

Discussion site: www.plagiocephalycare.org/board/

Website: www.PlagiocephalyCare.org.uk

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All About Plagiocephaly

About the group: "The mission of this group is as follows:
1. To provide support and advice in a positive and open manner for parents of children with plagiocephaly
2. To provide an unbiased look at the various forms of treatment available for the correction of plagiocephaly
3. To provide general information and files on plagiocephaly in one easily accessible place."

Discussion site: health.groups.yahoo.com/group/AllAboutPlagiocephaly/

Website:

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Torticollis Kids

About the group: "Is your baby's head always tilted to one side?
Does your infant always hold his/her head in the same position?

It may be torticollis!

This is a place for parents and caregivers of children with congenital muscular torticollis (CMT) to share information and ideas. You will find encouragement and support here from others dealing with torticollis in children.

This group has a lot of members (but not all are active).

We've got a lot of experience and knowledge! This group has over 3 years experience dealing with torticollis from the parent and caregiver's side!!

We can tell you what your peds might not know!!

Our goal is to help YOU get your child's torticollis resolved!
Welcome - we'd love to meet you and help you!"

Discussion site: health.groups.yahoo.com/group/Torticolliskids/

Website: www.TorticollisKids.org

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Craniosynostosis and Parents Support

About the group: "Welcome to the Craniosynostosis Support Group for the National Non-Profit Organization, CAPPS (Craniosynostosis And Positional Plagiocephaly Support, Inc.). Here you will meet other families that have a Cranio child and be able to share experiences, information, support, and be kept up do date on what CAPPS is doing to spread awareness. This forum is open to anyone who has a child in their life that has, or is suspected of having, Cranio."

Discussion site: www.cappskids.org/board/

Website: www.CAPPSKids.org/

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Cranio Chat

About the group: "A Support group for anyone who has had craniosynostosis touch their lives.

Ask questions, get information, meet people in the same situation. Join today!"

Discussion site: health.groups.yahoo.com/group/craniochat/

Website:

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A.P.N.P.: "Asociacin de Padres de Nios con Plagiocefalia y otras deformidades craneales"

Descripcin: Pgina web oficial de la Asociacin de Padres de nios con Plagiocefalia de Espaa la cual est adherida a FEDER "Federacin Espaola de Enfermedades Raras" (http://www.enfermedades-raras.org).

Esta web se ha realizado especialmente para guiar a los padres que se enfrenten por primera vez a sta patologa,en ella encontrarn informacin tanto de la Plagiocefalia como de las dems deformidades craneales y su tratamiento,tambin encontrarn fotos de nios tratados , un listado de los tratamientos que hay actualmente en Espaa ,y enlaces de inters.

Inicio del grupo:

Enlace relacionado: www.asociacion-plagiocefalia.com/

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AmeriFace

About the group: "AmeriFace (formerly AboutFace USA) was founded in 1991 to provide educational and emotional support to persons born with craniofacial anomalies and their families. The organization soon expanded to also serve persons with acquired facial differences due to burns, trauma and disease, and in 2004 partnered with cleftAdvocate under the same corporate umbrella."

Discussion site:

Website: www.AmeriFace.org

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cleftAdvocate

About the group: "The Mission of cleftAdvocate is to educate and inspire families whose lives are touched by cleft lip and/or palate or other craniofacial anomalies."

Discussion site:

Website: www.cleftAdvocate.org

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Moms of Helmet Babies (Fort Lauderdale, FL)

About the group: "The I wanted to start this group to get and give support to all the moms out there who have children with plagiocephaly, brachycephaly, and scaphocephaly. Many of these children need to wear a helmet to correct this condition. There is no local support groups in South Florida for us moms who have children with these conditions. This support group would be a great place for moms to connect, share, vent, lean on others, etc. I was recently told by my daughter's pediatrician that she needs to wear the helmet. Being a new mom, this is a little scary. I would like to have other moms that have gone through this or are currently going through it to help me and others..."

Discussion site:

Website: www.facebook.com/groups/185013528241503/

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Last updated: 26-Jul-2015
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