Working together toward a cure
Other MYT1L Resources
Here, you’ll find a collection of support networks from around the world who are navigating MYT1L syndrome. We hope these resources empower and support you in your experience. Together, we can raise awareness and foster a stronger community for those impacted by MYT1L syndrome.
Les Extra-Vaillants - MYT1L
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Les Extra-Vaillants - MYT1L is a non-profit association under the French law of 1901. The association was created by parents and supported by a team of doctors in clinical genetics and molecular genetics motivated by the subject. Its mission is to support, inform, raise awareness and take part in the advancement of clinical and fundamental research into MYT1L gene anomalies. Its objectives are to better understand, support, compensate and open up the field of possibilities for each of the different profiles of patients affected by this rare genetic disease, and at every stage of their lives. The association is recognized as being in the public interest, and is eligible for tax deductions in France. It is supported and accompanied by the Centre de Référence des anomalies du développement of the CHU de Rouen and by the AnDDi-Rares health network. Les Extra-Vaillants MYT1L is also a member of the Alliance des Maladies Rares.
Unique
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Unique is a charity located in the United Kingdom, whose mission is to "inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability/developmental delay". Unique provides informational pamphlets for families about specific genetic disorders, including practical guides for families and disorder-specific guides where you can find a guide entitled "MYT1L syndrome (MYT1L variants and 2p25.3 deletions)" in the "Single-Gene Disorders" section.
The Original 2p25 / MYT1L Family Community
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A families-only Facebook page where members can share, inform, support and seek support around the impact of variants/mutations, deletions and duplications of the MYT1L gene and other genetic differences in the 2p25 region of Chromosome 2. The Facebook group also features the latest events and news for families.
Simons Searchlight
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Simons Searchlight is an international research program dedicated to advancing the understanding of rare genetic neurodevelopmental conditions, including MYT1L-related syndrome. By gathering comprehensive data from families and individuals affected by these conditions, Simons Searchlight aims to shed light on the natural history and variability of such disorders.  For MYT1L-related syndrome, Simons Searchlight offers several resources: Gene Guide: A detailed overview of MYT1L-related syndrome, including information on symptoms, causes, and treatment options. Research Participation: Opportunities for families to contribute to ongoing research efforts, helping to expand the collective knowledge about MYT1L-related syndrome. Community Connection: Platforms for families to connect with others who have similar experiences, fostering a supportive community. By participating in Simons Searchlight, families can access valuable information, contribute to meaningful research, and connect with a community of individuals facing similar challenges.