Families, all over the world
This map is not just a tool.
That's a fact.
Behind every family counted, there is a child.
a journey that is often solitary.
unanswered questions
and an urgent need to be understood and supported.
This map was born out of a need.
Lack of visibility.
The lack of reference points.
The lack of connection between families.
This network is growing every day.
And with him, one thing becomes clear:
We are not isolated cases.
It's a call.
To researchers, professionals, and institutions.
Look.
Listen.
Understand.
Because behind every dot, there is a life.
And behind this map, there is an emergency.
So we decided to connect what wasn't connected.
To make visible those who were not.
Today, families from all over the world come together here.
They exist. They move forward. They wait.
The information shared respects the confidentiality of the families. For more information, please contact us.
Let's stop remaining invisible.
Are you affected by the syndrome?
Don't remain invisible.
Each family that registers,
This is a reality that can no longer be ignored.
That's one more voice.
This is another step towards recognition.
Initially, they were talking to us about numbers.
77 cases worldwide.
7 in France.
But behind these numbers, there were mostly questions.
Is this real?
Are there really so few of us?
Where are the other families?
So, we decided to search.
To connect.
To make visible what was not visible.
This map was born out of this need:
to understand, to find oneself, to exist.
A census created by a family, for families.
To show that we are here .
And that we are much more than just numbers.
Because the more of us who raise our voices,
The more it becomes impossible to ignore us.
The more research focuses on us.
The more things can progress.
This card is more than just a link between families.
It's a message.
Joining this network means being part of a movement that seeks to change things.
For our children.
For their future.
And for all those who will be diagnosed tomorrow.
They experience the syndrome on a daily basis.
Here, the words are those of families.
True stories, shared with their own words, their own emotions, their own reality
The first testimonies are coming soon
This page is under construction.
Families will soon be able to share their stories and experiences.