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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:
www.plagiosupport.org/
Plagiocefalia posicional
Descripción: "Página destinada a
compartir información sobre los tratamientos con ortesis craneal
existentes para solucionar la plagiocefalia y otras
deformaciones posturales que afectan a los niños. Está dirigida,
especialmente, a los padres y madres latinoamericanos en cuyas
regiones no existe tratamiento y deben trasladarse a otros
países a buscarlo..."
Inicio del grupo:
es.groups.yahoo.com/group/plagiocefalia_posicional/
Enlace relacionado:
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:
Plagiocefalia
Descripción: Página destinada a las
familias que buscan una solución para el problema de las
deformidades craneales de los recién nacidos y lactantes, en
especial la plagiocefalia posicional. Dos de los principales
objetivos del grupo son conseguir que desde recién nacidos los
bebés sigan pautas de prevención adecuadas y empezar el
tratamiento ortopédico lo antes posible cuando dichas pautas de
reposición y ejercicios fracasan.
Los especialistas en la materia constatan que la mejor respuesta
al tratamiento activo con banda ortopédica tiene lugar entre los
3 y los 9 meses de edad y que no tratar activamente la
plagiocefalia más allá de estas edades puede comportar una
deformidad permanente. A partir de los 2 años de edad sólo es
efectiva la cirugía.
Página esponsorizada por los centros españoles de Cranial
Technologies Inc.™ la empresa fabricante de DOC band®, líder
mundial en su campo.
Los consejos y los comentarios de los miembros del grupo no
traducen necesariamente la opinión de los promotores ni de los
moderadores."
Inicio del grupo:
es.groups.yahoo.com/group/Plagiocefalia/
Enlace relacionado:
www.plagiocefalia.com
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
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
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:
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
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/
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: www.CranioChat.org
A.P.N.P.: "Asociación de Padres de Niños con Plagiocefalia y otras deformidades craneales"
Descripción: Página web oficial de la
Asociación de Padres de niños con Plagiocefalia de España la cual
está adherida a FEDER "Federación Española 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 ésta patología,en ella encontrarán
información tanto de la Plagiocefalia como de las demás deformidades
craneales y su tratamiento,también encontrarán fotos de niños
tratados , un listado de los tratamientos que hay actualmente en
España ,y enlaces de interés.
Inicio del grupo:
Enlace relacionado:
www.asociacion-plagiocefalia.com/
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
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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