Les Enfants Dandy Walker : le FORUM

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Dandy Walker et Migraines/Maux de tete
 oui, AVANT diagnostique DW
 non, jamais
 oui, APRES diagnostique DW
 Traitement Shunt
 Traitement Medicamenteux
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Dandy Walker around the world - english -

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Hi There!

Welcome to this new Forum dedicated to this Rare Condition of the Brain.

You will find here a new place to express
  • your sorrows,
  • your joy,
  • your hopes
  • your new 'discoveries'...a place 'to let it go', a place for sharing!
Here we will chat for sure. But we will also  
  • see how life is treating one another with the DW...
  • what kind of help is installed in each part of the World
  • We will try to raise awareness about this rare condition and
  • try to share our solutions from our own experiences
  • Please let's give hope and the appropriate supports to these kids...
Do not hesitate to share your stories -
your kids' adventures, their fascinating journey.
Remember they will change the world!
You can alternatively visit the blog
Speak to you soon - Take Care xx 

Pas de nouveaux messages

I am a Mum to Be : my relationship with the DW during pregnancy

  • Dialogue/ Scans evolutions - Charts - Diagnosis
  • Baby's Health
  • Recurrence Risks
  • *international*

Pas de nouveaux messages

DW Kids around the World

  • Kids diagnosed with DW
  • Their Story
  • Their Journey
  • *international*

2528Ven 8 Oct - 19:00
murieluk me llamo Lautaro - Argentina
Pas de nouveaux messages

I am an Adult or a Young Adult with DW

You have been diagnosed with DW

Brief introduction to the other members

Your Story, Your Journey

A place to meet others with the same condition



Pas de nouveaux messages

NO DW HERE > Just caring people...

Your are not diagnosed with a DW, but you feel quite concerned :

members of your family or neighbours or people you work with are...

Whatever the reasons, you are happy to be here and share your thoughts and praise these kids!

Who are You ? Introduction to the other members


Pas de nouveaux messages

Inclusion or Exclusion ?

  • Reaching the Curriculum - from kindergaten to university
  • On Daily Life - chilminders, after schools clubs, camps, holidays, sports club... -
  • Work Life - jobs, trainings, apprenticeships, full time, part time, volonteers..-
  • Inside the Family -brothers and sisters, family in law, close or remote family..-
  • The Others' reactions/views -friends, colleagues, neighbours...-
  • *international*

Pas de nouveaux messages

The Outcomes > difficulties - syndromes - disease

It would be nice for everyone to give an inside view.

Please try to not copy websites definitions but links instead...

I believe sharing what you must fight or cope with on a daily basis gives in fact a better picture to all! Thanks for that.

  • Difficulties/Disabilities
  • Syndromes
  • Malformations
  • Disease
  • *international*

Pas de nouveaux messages

Progress - Achievement

Every parents are happy and prouds of their children. It is even better when against all odds they achieve goals no matter what doctors said!


Here we are proud to brag about our little ones' progress or our owns as well! Nothing is small or big, you can brag as much as you want no matter what...

Here we will see how life is good with each other and how everyone is doing?


Feel free to share! *international*


Pas de nouveaux messages

Extra-Care - Treatments

  • Therapies
  • Stays in Hospital/Life in Hospital
  • Surgeries
  • Treatments - Equipments
  • Medical Team, locations...
  • *international*

Pas de nouveaux messages

Where to go to get the right equipment ?

  • What equipment do we need to gain in self confidence, independence, well being -physically and mentally-?
  • Your adds and offers - new or second hand-
  • Your providers...

Pas de nouveaux messages

What's happening in your area ?

Meetings - Events - Assemblies regarding the DW and associated conditions as well as other rare disease.


In you Area - > For You To Share  or to Create


To meet others experiencing similar situations

-and give the children the opportunity to indentify themselves with the condition

Pas de nouveaux messages

How to cope on a daily basis ? Helps, Supports, Organisations, Hints and Tips, Links, Reading...

It is all in the title in fact! Share you experiences. Give your feedbacks - positive or negative. Express yourself!



Pas de nouveaux messages

How about a little chat ?

Chatting around a virtual cuppa...

No specific topic here!

Share your passions, your opinions...Give you feedbacks on any matters that bother you...release the pressure! Put your feet up, sit back and relax!


Give us a smile > nope no big brother here, well...not sure though but life is amazing ! Let it Shine, Let it Shine...

Pas de nouveaux messages

Giving Hope All Together > words of encouragment and help

You are not personnally touched with this condition.

You feel quite concerned though!

Thank you for your compassion, your words of encouragement, your support.




11Jeu 21 Oct - 4:54
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