Much like the United States’ National Organization for Rare Disorders (NORD), E-Rare in the European Union was launched over a decade ago to bring together organizations that fund research for rare diseases.
So what is so special about E-Rare?
E-Rare has formed “an ecosystem” to fund research in the European Union, of which is now spreading to the United States, Canada, and Japan. This ecosystem includes well developed healthcare systems, in addition to those without much special interest in the rare disease community, and patient groups, such as EURORDIS.
In this ecosystem, sustainable collaborations were fostered to bring together researchers.
There are also very limited exclusions for diseases to get funding from E-Rare; the main one only applies to diseases that already have a specific revenue stream.
In fact, to date, over 100 million euros have been invested in research for underrepresented rare diseases.
So a lot has already been accomplished since the foundation of E-Rare, but what is next for the organization?
The major goal for E-Rare is to garner support from the European Joint Programme Cofund to help coordinate innovation and research programs for rare diseases on a national scale, ultimately, closing the gap between patients and research.
This proposal has been in motion for over a year and hopefully, will be launched this coming November, with work commencing in January of 2019.
Although there are many barriers, both logistical and economical, to work through, the rare disease community is special because the people in it are so passionate and motivated. Every update in the community is a huge opportunity that will be made the most of, just like E-Rare.
To learn more about E-Rare and the new ERN program from one of the program coordinators, Dr. Daria Julkowska, see her interview with Horizon here!
