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 rare disease patient advocate with over a decade’s worth of experience in the healthcare field. He is originally from Chicago, USA and has been living in Europe since 2008.
He studied Psychology at 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 succeeding.
In a pivotal move in his life, 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 one of his personal heroes and 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 communities 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 there.
Robert speaks English, Romanian, French, 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.