ISTisNA: Training Event for Patients, Patient Relatives, and Patient Associations

ISTisNA conducted the "Training for Patients, Patient Relatives, and Patient Associations" event supported by the Istanbul Development Agency (ISTKA). The ISTisNA - Istanbul Solution Platform for Undiagnosed and Rare Diseases, in collaboration with the participant IBG - Izmir Biomedicine and Genome Center, organized this event on April 26-28, 2024. 

The event aimed to teach presentation, negotiation, and leadership skills through general presentations and interactive sessions, thereby enhancing the participants' ability to communicate assertively and represent their needs when interacting with healthcare providers and other stakeholders in rare diseases. It focused on influencing critical decisions and guiding the strategic decision-making process.

The event featured speakers and topics including Prof. Sibel Aylin Uğur İşeri from Istanbul University, Prof. Özden HATIRNAZ NG and Prof. Uğur Özbek from Acıbadem University, Emrah Kozan, founder of Piksel Academy, Clinical Psychologist Özge Esra Kaboğlu, EURORDIS Research and Policy Project Manager Gülçin Gümüş, Lawyer Zeynep Çakır and Eftelya Özge Cora, Vice Chairman of the Board of the Federation of Rare Diseases Güneş Uyar, founder and president of the International Center for Strategic Health Research (USSAM) Sedat Bostan, Secretary-General of the Hope Foundation for Children with Cancer, Gözde Kaymaz, and freelancer Burak Keskin. 

The 31 attendees discussed topics including Creative and Innovative Thinking, Design Thinking, Social Innovation for Civil Society, Communication Skills – Effective Podcast Preparation and Presentation, the ISTisNA Project on Rare Diseases and Civil Society, the Importance of NGOs in Rare Diseases and the Opportunities They Provide, Patient Rights, Fair Healthcare, Self-Advocacy, Rare Diseases Communication, Value-Based Selling – Relationship-Based Resource Development and Social Impact Measurement and Management.