Robert is a patient advocate that has worked across four different EU countries. He is skilled at uniting international rare disease patient groups to address common goals.
Robert is a patient advocate that has worked across four different EU countries (Romania, France, Norway and Spain). He is skilled at uniting international rare disease patient groups to address common goals.
Robert has over 15 years worth of experience in the healthcare field. He is originally from Chicago, Illinois, USA and has been living in Europe since 2008.
He studied Psychology at the University of Illinois where he focused on special education. After graduation, Robert led a group of adults with intellectual disabilities in a sheltered workshop environment. There he learned person-centered planning and the importance of getting to know the needs of each individual to assist them in reaching their potential.
Robert moved to Romania in 2008 with the United States Peace Corps where he served as an institutional development volunteer with the Romanian National Alliance for Rare Diseases. There, Robert worked with a cornerstone of rare disease patient advocacy in Romania, Dorica Dan, in creating a rare disease information center in Romania in partnership with the Norwegian organization, Frambu. Rob helped manage the complex, cross-border project with the team and got to meet patients from a range of rare diseases. He assisted in advocating for the first National Plan for Rare Diseases in Romania after consultation with Alliance members.
Next, Robert moved to Paris to join EURORDIS Rare Diseases Europe as the online patient communities’ manager where he worked for seven years. Along with Denis Costello, he co-founded RareConnect.org, the multilingual, global, online community for rare diseases built in partnership with patient organizations.
Robert had daily contact with people living with rare diseases and helped individuals break free from isolation while strengthening the relationships between international patient groups. Midway through his time with EURORDIS, he moved to Barcelona to help establish a new EURORDIS office in the city.
Robert speaks English and Spanish. He believes in putting patients’ needs first and the power of social media and new technologies to improve the lives of people living with rare diseases.
+34 653 700 739