Together for Dias-Logan Syndrome
BCL11A-IDD
Understand today. Hope for tomorrow.
They are rare. But they exist.
Dias-Logan syndrome (BCL11A-IDD) is a rare genetic disease that profoundly impacts a child's development and daily life.
Behind every diagnosis, there are children, families, journeys filled with challenges, hope, and courage.
Our mission
Faced with a lack of information and guidance regarding Dias-Logan syndrome (BCL11A-IDD), we have created an international initiative to:
Connecting families across the world
Sharing reliable and accessible information
Structuring knowledge around the syndrome
Contribute to advancing research
Because no one should face the unknown alone.
A global mobilization
Families from many countries have already joined this initiative.
Each testimony, each participation contributes to a better understanding of the syndrome and to building a strong international network.
Today, this dynamic transcends borders and brings together families across the world, united by a common reality and a common desire to move forward.
Families in more than 28 countries including France, the United States, Italy, Argentina, Australia...
109
people counted
A project in motion
A project that grows every day, across the world
69
study participants
28
countries represented
What is Dias-Logan syndrome?
Better understanding the syndrome
Dias-Logan syndrome (BCL11A-IDD) is an extremely rare genetic neurodevelopmental disorder.
An intellectual disability ranging from mild to severe
a development delay
language disorders
motor difficulties
behavioral peculiarities
hypotonia
microcephaly
brain abnormalities
autism spectrum disorders
fatigue
hypersensitivities
It impacts child development with varied manifestations, different from one child to another.
It can notably lead to:
Each child develops at their own pace, with their own abilities and their own challenges.
Today, our knowledge remains limited.
Access to information is often difficult, and many families find themselves alone facing a diagnosis they do not know.
Understanding, supporting, sharing...
This is essential for moving forward.
Families, a shared reality
Every family has its own story.
Every child is unique.
But behind the rarity of the syndrome, a reality is sometimes found in the world:
Parents seeking answers, children progressing at their own pace, and a deep need to no longer be alone.
Today, these families connect, understand each other, and help each other.
Because together, everything becomes possible.
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You are no longer alone.
Join an international community