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Kleefstra Syndrome
Kleefstra Syndrome

An information page about a rare genetic syndrome

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Kleefstra Syndrome
Kleefstra Syndrome

An information page about a rare genetic syndrome

July 10, 2022August 19, 2026

Establishment of IDefine Europe for the European Kleefstra syndrome community

Recently, the Tanja Zdolšek Draksler undertook its creation Define Europe, with the aim of strengthening the Kleefstra syndrome community in Europe. Tanja is an active and tireless researcher, as well as the mother of a child with Kleefstra syndrome. Her personal experience, combined with her involvement in the international community, has led her to take active steps toward raising awareness, networking families, and promoting research surrounding the syndrome.

According to Tanja, choose the name Define Europe because he has been collaborating since 2020 with the non-profit organization IDefine, based in the United States. The two organizations share common goals and seek to support Kleefstra syndrome families and research internationally.

Having an organized presence in both the United States and Europe is important, as the two regions have different healthcare systems, different institutional frameworks, and different capabilities for supporting actions for rare diseases.

Η IDefine and the Define Europe they aspire to further unite families, researchers, and professionals active around Kleefstra syndrome and to contribute to the creation of a stronger international community.

Through this collaboration, more opportunities can be created for information, participation in research, sharing of experiences, and better representation of the needs of individuals with Kleefstra syndrome and their families.

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