Who We Are
Some journeys do not begin with a diagnosis, but with the need for one.
When something seems amiss in a child’s development, families often find themselves facing more questions than answers. Behind this uncertainty may lie very rare and little-known genetic causes—one of which is a neurodevelopmental disorder associated with mutations in the TBL1XR1 gene.
Herdem Çare Association 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.
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’s symptoms. This journey is not only medical, but also social, emotional, and economic—a modern-day silent odyssey woven with uncertainty, hope, and patience.
In 2024, the complex diagnostic process of a child from Türkiye, evaluated at Harvard University / Massachusetts General Hospital, sparked awareness that transformed loneliness into collective action.
The Harvard research team emphasized that access to treatment is only possible through sufficient clinical data—and that such data can be gathered only through organized and informed patient communities.
With this understanding, and with a vision to unite isolated individual efforts, Herdem Çare Association was established on February 28, 2025—Rare Disease Day.
Herdem Çare was born to create a patient community that does not remain isolated, but comes together and grows stronger through solidarity.
Our name reflects the essence of this journey:
- “Herdem” (meaning “everlasting” or “always”) symbolizes the determination to be reborn at every moment.
- “Çare” (meaning “remedy” or “solution”) represents the hope of a cure sought and found together.
The words of Yunus Emre illuminate this spirit:
“Her dem yeniden doğarız, bizden kim usanası…”
(“At every moment we are reborn—who could ever grow weary of us…”)
Herdem Çare is a bridge—transforming disconnection into collaboration, linking families, experts, and research institutions, facilitating access to knowledge, making the collective struggle visible, and carrying hope along the path to treatment.
Every diagnosis is a beginning.
Every unity is a remedy.
Everlasting hope, everlasting cure.
Our collaborations
Our association aims to generate tangible solutions in the field of TBL1XR1 by bringing together the shared knowledge and collective strength of families, experts, and research institutions.
To achieve this goal, we engage in scientific research, clinical practice, and advocacy-focused collaborations with national and international stakeholders.
Harvard University & Massachusetts General Hospital
Prof. Dr. Florian Eichler and his team at Harvard Medical School / Massachusetts General Hospital are conducting promising research on TBL1XR1 gene mutations, focusing on the development of potential gene therapy approaches.
Acıbadem University
Under the leadership of Prof. Dr. Yasemin Alanay, we collaborate on genetic counseling, clinical evaluation, and multidisciplinary treatment approaches for individuals affected by TBL1XR1-related conditions.
Altınbaş University
In collaboration with Prof. Dr. Tunç Fışgın and the academic team at Altınbaş University Faculty of Medicine, our work focuses on clinical follow-up, genetic evaluation, and the sharing of scientific data specific to TBL1XR1.
Fly Little Bird Foundation
Through our collaboration agreement with the U.S.-based Fly Little Bird Foundation, we develop joint projects focused on advocacy, parent education, patient guidance, and international communication for TBL1XR1 and other rare diseases.
Other Stakeholders
We carry out collaborative projects with special education institutions, genetic laboratories, pediatric associations, and NGOs from various countries that are active in the field of neurodevelopment.
