Founding Board

Herdem Çare Association was established by volunteers from diverse professional backgrounds who share a strong sense of social responsibility and commitment to rare diseases.
Each founder contributed their vision and efforts to lay the intellectual foundation of Herdem Çare, enabling the first steps of this journey.
The founders not only initiated the legal process but also collectively shaped the association’s core values and vision.
After the first general assembly, responsibilities were transferred to the newly elected management bodies.

Board of Directors and Audit Committee

The decision-making, execution, and oversight processes of Herdem Çare are carried out by volunteer members with expertise in their fields.

• The Board of Directors is responsible for implementing the association’s vision.
• The Audit Committee ensures that activities are conducted transparently and in compliance with regulations.

Board of Directors – Regular Members

• Dr. Ayşegül Altınbaş – Chairperson
• Berrin Zorlu – Vice Chairperson
• Yasemin Memişoğlu – Secretary General
• Sevgi Akdemir – Treasurer
• Prof. Dr. Tunç Fışgın – Member

Board of Directors – Alternate Members

• Nusret Altınbaş, Ömer Fener, Çağla Boral, Melek Okur, Yıldız Hitit

Audit Committee – Regular Members

• Prof. Dr. Sevtap Yokuş Veznedaroğlu – Chairperson
• Nilgün Demir – Reporter
• Dr. Tomru Dereköylü – Member

Audit Committee – Alternate Members

• Banu Eraslan, Ayşegül Tuncer, Melek Erhan

Scientific Advisory Board

At the heart of Herdem Çare, the Scientific Advisory Board consists of nationally and internationally recognized scientists with expertise in rare diseases.
This board guides research efforts, strengthens collaborations, and ensures that information is generated for the benefit of patients.

Board Members:

• Prof. Dr. Florian Eichler – Harvard Medical School, Professor of Neurology / Director, MGH Center for Rare Neurological Diseases
  (Conducts clinical and molecular studies on TBL1XR1 gene mutations)
• Prof. Dr. Yasemin Alanay – Acıbadem University, Professor of Pediatrics / Director, ACURARE Rare Disease Application and Research Center
• Prof. Dr. Tunç Fışgın – Dean, Altınbaş University Faculty of Medicine / Specialist in Pediatric Hematology and Oncology
• Dr. Amanda Nagy – Harvard Medical School / MGH, Pediatric Neurologist
  (Works on clinical presentations associated with TBL1XR1)
• Dr. Stephen J. Haggarty – Harvard Medical School / MGH, Neuroscience Researcher
  (Preclinical studies on genetic signaling pathways)
• Assoc. Prof. Özlem Akgün Doğan – Acıbadem University, Department of Medical Genetics
• Assoc. Prof. Süleyman Çakıroğlu – Altınbaş University, Child and Adolescent Psychiatry
• Dr. Başak Adaklı Aksoy – Altınbaş University / Medical Park, Pediatric Hematology and Oncology
• Dr. Türkan Uygur Şahin – Medical Park, Pediatric Neurology / Altınbaş University Lecturer
• Dr. Bilal Murat Memişoğlu – Istanbul University, Istanbul Faculty of Medicine, Internal Medicine

Commissions

Herdem Çare’s activities are organized through commissions structured according to areas of expertise, each responsible for strategy development, implementation, and sustainability.

• Social Awareness & Communication Commission
  Chairs: Dr. Tomru Dereköylü, Ömer Fener
• Events & Resource Development Commission
  Chair: Ayşegül Tuncer
• Patient & Family Support Services Commission
  Chair: Çağla Boral
• National & International Collaboration Commission
  Chair: Sevgi Akdemir
• Public Institutions & Legal Affairs Commission
  Chair: Prof. Dr. Sevtap Yokuş Veznedaroğlu
• Scientific Research & Academic Collaboration Commission
  Chair: Prof. Dr. Tunç Fışgın