Robert Pleticha

Dedicated patient advocate and rare disease expert

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With an extensive background spanning four distinct EU countries, Robert Pleticha stands as a seasoned patient advocate in the realm of rare diseases. He has a unique talent for rallying international rare disease patient communities towards common objectives, leveraging his knowledge and experience gathered over 15 years in the healthcare sector. Originating from Chicago, Illinois, USA, Robert has called Europe home since 2008, expanding his perspectives and fortifying his global understanding of healthcare challenges.

Robert’s academic journey began at the University of Illinois, where he specialized in Psychology with a focus on special education. Upon graduation, he guided a group of adults with intellectual disabilities within a sheltered workshop setting, where he mastered person-centered planning and the necessity of individualized care.

In 2008, Robert took on an institutional development role with the Romanian National Alliance for Rare Diseases as part of his service with the United States Peace Corps. Collaborating closely with rare disease advocate Dorica Dan, he contributed to creating a crucial rare disease information center in Romania NoRo, in partnership with the Norwegian organization, Frambu. During this time, Robert honed his project management skills, overseeing the intricate, transnational project while familiarizing himself with a spectrum of rare diseases. His work helped support the development of the first National Plan for Rare Diseases in Romania, following extensive consultations with Alliance members and policymakers. 

Robert then transitioned to Paris, joining EURORDIS Rare Diseases Europe as the manager of online patient communities, a role he passionately fulfilled for seven years. Alongside Denis Costello, he co-founded RareConnect.org, a multilingual, global, online community for rare diseases, established in collaboration with patient organizations. Here, Robert worked tirelessly to help individuals break free from isolation, strengthening international patient group relationships along the way. Midway through his tenure at EURORDIS, he moved to Barcelona to help set up a new office in the city.

Fluent in English and Spanish, Robert firmly believes in prioritizing patients’ needs and leveraging social media and emerging technologies to enhance the lives of those living with rare diseases. His passion for patient advocacy and his rich experience make him an invaluable asset in our quest to provide patient-driven solutions.

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