{"id":282,"date":"2025-08-22T18:22:02","date_gmt":"2025-08-22T18:22:02","guid":{"rendered":"https:\/\/herdemcare.org.tr\/biz-kimiz\/"},"modified":"2025-10-02T18:54:10","modified_gmt":"2025-10-02T18:54:10","slug":"biz-kimiz","status":"publish","type":"page","link":"https:\/\/herdemcare.org.tr\/en\/biz-kimiz\/","title":{"rendered":"Who We Are"},"content":{"rendered":"\t\t
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Who We Are<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Some journeys do not begin with a diagnosis, but with the need for one.<\/span>
When something seems amiss in a child\u2019s development, families often find themselves facing more questions than answers. Behind this uncertainty may lie very rare and little-known genetic causes\u2014one of which is a neurodevelopmental disorder associated with mutations in the TBL1XR1<\/strong> gene.<\/span><\/p>

Herdem \u00c7are Association<\/strong> was founded to stand beside individuals living with this disorder on their path from diagnosis to treatment, to improve their quality of life, to support scientific research, and to raise public awareness of this ultra-rare disease.<\/span><\/p>

In rare diseases, reaching a diagnosis often takes years. Families may travel from city to city, even from country to country, searching for a name for their child\u2019s symptoms. This journey is not only medical, but also social, emotional, and economic\u2014a modern-day silent odyssey woven with uncertainty, hope, and patience.<\/span><\/p>

In 2024, the complex diagnostic process of a child from T\u00fcrkiye, evaluated at Harvard University \/ Massachusetts General Hospital<\/strong>, sparked awareness that transformed loneliness into collective action.<\/span>
The Harvard research team emphasized that access to treatment is only possible through sufficient clinical data\u2014and that such data can be gathered only through organized and informed patient communities.<\/span><\/p>

With this understanding, and with a vision to unite isolated individual efforts, Herdem \u00c7are Association<\/strong> was established on February 28, 2025\u2014Rare Disease Day<\/strong>.<\/span>
Herdem \u00c7are was born to create a patient community that does not remain isolated, but comes together and grows stronger through solidarity.<\/span><\/p>

Our name reflects the essence of this journey:<\/span><\/p>