Chairperson and founding member of the Greek (Panhellenic ) Association of Patients & Friends suffering from Lysosomal Diseases "The Solidarity" established in 1997. She is a Gaucher Patient with a long and difficult patient journey. Born in Athens and grew in South Africa she gained language skills which helped to connect the association to Europe and USA.
She is a foreign language teacher by profession.
Driven and compassionate voluntary advocate for Lysosomal Patients and Caregivers for 26 years as a patient leader has collaborated with all Stakeholders, especially Health Professionals to ensure diagnosis, treatment, monitoring and guidance for patients and families . To ensure better quality of life for patients claimed social support (education legislation and disability benefits .working prospects)
Represents the Association in Eurordis since 2003 ( a full member) and has been a founding member of the .International Gaucher Alliance ,Member of the European Scientific Working Group on Gaucher Disease and member of the EHA (European Hematology Association) Gaucher Task force.Collaborating with Pompe International , Mps International and Fabry International has taken part in many International Conferences ,proposed policies for better health and social care.
She's also been part of the European Reference Network for Metabolic diseases for many years and took action in the National Debate in the Greek Parliament in 2017 for the establishment of Centers of Expertise . There she proposed best practices of hospitals monitoring Gaucher patients.Today Laiko Hospital department of Thalassaemia is a center of expertise for Gaucher disease under the Supervision of Mrs Komninaka.
Rare disease patients need highly specialised treatments,monitoring and holistic care . Partnering with Health authorities and Health Professionals for many years achieved better quality of health care in hospitals all over Greece.Today she is claiming Home Therapy for Lysosomal Patients to ensure that patients have many choices especially for students,young people pursuing careers and the elderly.
Educated in Patient academies and European workshops concerning Clinical Trials,Health Technology Assessment ,Patient advocacy ,Legal rights ,social care and awareness has taken part in Projects in European Alliances ,led projects in her association concerning Patient empowerment .
She has organized International Days such as the Athens Marathon ,published articles in National Newspapers and appeared on national TV.
Her motto is a patient centered Health system for Rare Disease Patients.