Kate THEOCHARI

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.