Like families in the US dealing with hemophilia with inhibitors, those in Europe are hungry for information, education and social networking. That’s why the European Haemophilia Consortium (EHC), an international nonprofit organization representing 45 patient organizations for people with rare bleeding disorders, held its first inhibitor summit December 1-4, 2016, in Barretstown, Ireland.
Nearly 90 consumers came from near and far, from Austria to Azerbaijan, to meet others like themselves—some for the first time--and learn more about the care and management of inhibitors. During the four-day summit, participants attended sessions on such topics as current and future treatments, pain management and physical therapy. During the daily “peer-to-peer” sessions, people were clustered in small groups either by age or by interest in certain topics to facilitate discussion on a more intimate level. Recreational activities helped families bond while they were playing miniature golf, horseback riding or rock climbing.
The National Hemophilia Foundation (NHF) was invited to send two staff members to attend the conference to provide support and feedback, and to glean ideas for its own inhibitor summits. NHF was proud and honored to be able to continue its information sharing on such programs. Earlier this year, two EHC representatives attended NHF’s Inhibitor Education Summit in New Orleans.
Dawn Rotellini, NHF Senior VP of Chapter Development & Education, and Sarah Waite-Ardini, Program Manager, attended “Successful inclusion of people with inhibitors in patient organisations,” one of the peer-to-peer sessions. “We found this to be one of the most valuable sessions, as each participant was able to share what they viewed to be the most important needs for the inhibitor community in their home country,” said Waite-Ardini. “As a group, we drafted hypothetical inhibitor programs to address these needs.”
EHC plans to make the inhibitor summit an annual event. For more information, visit: http://www.ehc.eu/.
The EHC Inhibitor Summit was sponsored by Shire.
