Together for Dias-Logan Syndrome
BCL11A-IDD
Understand today. Hope for tomorrow.
An international organization created by families to bring together people affected by Dias-Logan syndrome, share information and connect families around the world.
They are rare. But they are here.
Dias-Logan syndrome (BCL11A-IDD) is a rare genetic neurodevelopmental disorder whose features and support needs can vary greatly from person to person.
Behind every diagnosis is a person, a family, a story, and a unique journey.
Our Mission
Faced with a lack of information and guidance surrounding Dias-Logan syndrome (BCL11A-IDD), we have created an international organization with several goals:
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Bring families together and connect them around the world
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Share accessible information from reliable sources
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Encourage families to share their experiences
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Raise awareness of Dias-Logan syndrome
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Facilitate communication between families, healthcare professionals, and researchers
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Support serious, well-structured research projects when the appropriate conditions are in place
Because no one should face the unknown alone.
A Global Community
Families from many countries have already joined Together for Dias-Logan Syndrome.
Every story, every exchange, and every contribution helps build connections, share experiences, and raise awareness of the realities experienced by people affected by Dias-Logan syndrome.
Today, this community reaches across borders and brings together families from around the world with one shared goal: no longer having to face such a rare condition alone.
Families in more than 29 countries including France, the United States, Italy, Argentina, Australia, and many others
121
people counted
A project in motion
A project that grows every day, across the world
74
people partipated in our association questionnaire
29
countries represented
What is Dias-Logan syndrome?
Understanding the syndrome better
Dias-Logan syndrome (BCL11A-IDD) is a rare genetic neurodevelopmental disorder associated with an alteration in the BCL11A gene.
Its manifestations can vary greatly from one person to another, both in type and in severity.
It may notably be associated with:
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global developmental delay ;
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intellectual disability of varying severity ;
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significant speech and language delay or impairment ;
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motor difficulties ;
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hypotonia ;
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microcephaly ;
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behavioral difficulties ;
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autism spectrum features in some individuals ;
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seizures in some individuals ;
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persistence of fetal hemoglobin (HbF), a characteristic feature of the syndrome
Each person has their own individual profile, with their own abilities, needs, and challenges.
Knowledge about the syndrome remains limited because of its extreme rarity. This is why access to reliable information, sharing experiences between families, and dialogue with healthcare professionals and reseachers are particularly important.
Understand, share, connect - so that families do not have to face the diagnosis alone.