Two staff members from EURORDIS (Rare Diseases Europe) participated in the conference co-hosted by NORD and DIA last week (U.S. Conference on Rare Diseases and Orphan Products).  Maria Mavris, PhD, Director of Therapeutics Development, and Flaminia Macchia, Director of European Public Affairs, both spoke at the conference and added an important global perspective.

Maria, who is originally from Australia, and Flaminia, who is Italian, are lively, fun and smart, and my colleagues and I enjoyed this opportunity to interact with them.  They and their EURORDIS colleagues also share the focus, sense of mission, and dedication to patients that is so characteristic of the NORD staff.  This creates a special bond between our two organizations.

EURORDIS and NORD launched a strategic partnership three years ago with the aim of serving patients and patient organizations by facilitating linkages between those in the U.S. and in Europe.  Ultimately, of course, the goal is to create a network of patient organizations working together around the world since the challenges, hopes and opportunities we all face are essentially the same, no matter where we are located.

Through projects such as sponsoring the global Rare Disease Day, creating RareConnect (a social networking platform of global disease-specific patient/family communities), and developing global white papers to advance the development of treatments, we believe the partnership between EURORDIS and NORD will further the goals of the entire rare disease community.

With rare diseases, almost more than with any other single cause, thinking globally is not only smart.  It’s absolutely essential.