To support is to move things forward
Behind these projects, there are children.
Unique, sometimes complex journeys.
Behind these children, there are families.
Those who search, those who learn, those who move forward...
often without reference points.
And today, there is a will.
The goal is to better understand, to better support, and to make things evolve, step by step.
This project is being built every day, with what we have.
But to go further, we need support.
Because together, we go further.
Why support us
Today, this project is moving forward thanks to a simple energy source:
that of families... and of those who choose to support us.
Raising awareness of a rare syndrome, better understanding the journeys, creating links between families, structuring useful information and contributing, at our level, to advancing research requires time, commitment...and resources.
In concrete terms, your support allows us to develop the website, to carry out awareness campaigns, to support families and to continue to structure the data to better understand the syndrome.
This project is being built step by step.
Among the important steps to come, the first international meeting bringing together families, researchers and clinicians is being prepared for spring 2027 in Charente-Maritime, France.
For this project to come to fruition and continue to grow, the support of individuals and businesses is essential.
But beyond this event, supporting us allows us to continue all of our actions, today and tomorrow.
We will regularly share, on the website and our social media, what your support allows us to achieve.
Because every gesture counts. Really.
Your donations are tax-deductible.
By supporting our association, you benefit from a tax advantage:
Individuals: 66% of your donation is tax-deductible
A donation of 100 euros actually only costs you 34 euros
Corporate (sponsorship): 60% of the amount is deductible (within the limits of current legislation)
A tax receipt will be issued for each donation.
Legal notice
Website editor
Association Together for Dias-Logan Syndrome (BCL11A-IDD)
17890 Chaillevette
Responsible for publication:
Virginie and Alexis Legris
Contact :
Accommodation :
This site is hosted by:
Wix.com Ltd
40 Namal Tel Aviv St., Tel Aviv 6350671, Israel
Website: www.wix.com
Intellectual property
All content on this site (texts, visuals, data, graphics, structure, graphic elements) is the property of the association Together for Dias-Logan Syndrome (BCL11A-IDD), unless otherwise stated.
Any reproduction, representation, modification, publication, transmission or exploitation, in whole or in part, of this content is prohibited without prior written authorization.
Personal data
The information collected via this site (forms, contacts, exchanges) is used solely for the association's activities:
connecting families
communication about the project
data collection and structuring
This data is in no way sold or used for commercial purposes.
In accordance with current regulations (GDPR), you can request access to, modification or deletion of your data by contacting us at the following address:
Data and research
The data presented on this site comes from collaborative work carried out with families affected by Dias-Logan syndrome (BCL11A-IDD).
They are presented for informational purposes and are intended to help to better understand the pathways and needs.
This information is in no way a substitute for medical advice, diagnosis or professional treatment.
Some data may be partial and subject to change.
Responsibility
The association strives to provide information that is as accurate and up-to-date as possible.
However, it cannot be held responsible for omissions, inaccuracies or deficiencies in updating information.
The use of information on this site is the responsibility of the user.
External links
The site may contain links to external sites.
The association cannot be held responsible for the content of these third-party sites.
Funding and transparency
The donations and support received by the association contribute to:
develop the website
to carry out awareness campaigns
accompanying families
supporting data structuring and research
The association is committed to communicating regularly on the use of funds via the website and its networks.
Last updated: April 2026
Privacy Policy
The purpose of this privacy policy is to inform users of the site about how their personal data may be collected, used and protected.
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Data collected
We may collect certain data when you:
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Contact us via a form or by email.
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participate in our actions or projects
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exchange ideas with us within the family network
The data collected may include:
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name or pseudonym
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e-mail address
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information shared voluntarily within the framework of exchanges
No data is collected without your knowledge.
2. Purpose of the collection
The data is used solely for:
respond to your requests
to inform you about the association's activities
to promote exchanges between families
structuring useful information around the syndrome
We do not make any commercial use of the data.
3. Research-related data
As part of our data collection and analysis work:
The data comes from voluntary contributions.
they are used in a global and anonymized way
No personally identifiable data is published
The goal is to better understand the syndrome, not to identify individuals
4. Data retention
The data is kept only for as long as necessary for the association's activities and the proper management of exchanges.
5. Data Protection
We are implementing appropriate measures to protect data against
unauthorized access
the loss or alteration
6. Data Sharing
The data is neither sold, nor rented, nor given to third parties.
They can be used in a collaborative setting with actors involved in understanding the syndrome, without disclosing personally identifiable information .
7. Your rights
In accordance with current regulations (GDPR), you have the following rights:
access rights
right of rectification
right to delete
You can exercise these rights at any time by contacting us:
8. Cookies
The site may use cookies to improve the user experience.
You can configure your browser to refuse or limit their use.
9. Policy evolution
This policy may change depending on the development of the project and legal obligations.
Protection of personal data (GDPR)
The association Together for Dias-Logan Syndrome (BCL11A-IDD) attaches particular importance to the protection of personal data and respect for privacy.
We are committed to processing data responsibly, transparently and securely, in accordance with the General Data Protection Regulation (GDPR).
1. Data Controller
The personal data collected on this site is processed by:
Association Together for Dias-Logan Syndrome (BCL11A-IDD)
Managers: Virginie and Alexis Legris
2. Nature of the data collected
We only collect the data strictly necessary for the proper functioning of our operations:
Contact information (email, first name, username)
information shared voluntarily by families
data related to exchanges or contributions
No automatic collection of sensitive data is carried out without your consent.
3. Purpose of the processing
The data is used exclusively for:
respond to requests
to promote exchanges between families
structuring information around the syndrome
support awareness and research activities
The data is never used for commercial purposes.
4. Research-related data
As part of our work:
the data is collected on a voluntary basis
they are processed in a global and anonymized manner
No personally identifiable data is published
Our approach aims to better understand, without exposing.
5. Data retention
The data is kept only for the time necessary for the association's activities and can be deleted at any time upon request.
6. Data Security
We implement appropriate technical and organizational measures to protect data against:
unauthorized access
disclosure
the loss or modification
7. Data Sharing
The data is neither sold, nor rented, nor transferred.
They can be used in a collaborative setting (families, healthcare professionals, research), but only in an unidentifiable form.
8. Your rights
In accordance with the GDPR, you have the following rights:
right of access
right of rectification
right to erasure
right to restriction of processing
You can exercise these rights at any time by contacting us:
9. Consent
By using this site or by sending us information, you agree that your data will be used in the manner described above.