This year marks the end of a second decade of achievements for EURORDIS, now formally known as EURORDIS-Rare Diseases Europe.
EURORDIS is a non-governmental alliance that is the voice of rare diseases throughout Europe, so this anniversary is definitely worth celebrating.
To do so, we should first recognize the past two decades in the rare disease community. 20 years ago, there was widespread ignorance surrounding rare diseases. But now, with the constant help of organizations such as EURORDIS, the rare disease community is becoming more and more of a public health priority.
There are now laws regulating the development of orphan medications. New innovations have changed the lives of those affected by rare disease, and specialized centers of care are becoming more and more accessible to patients.
While the rare disease community is larger and more widely connected and more widely recognized than 20 years ago, there is still a long way to go. However, there are great leaders at the helm of this movement, like EURORDIS.
In planning for the subsequent 20 years, EURORDIS has announced an updated vision for the organization, one that enables
“better lives and cures for people living with a rare disease.”
This vision is further encapsulated in a mission statement to
“work across borders and diseases to improve the lives of people living with a rare disease.”
Together, the new mission statement, vision, formal name, (and a new logo!) are part of a new strategy for the future, one that is focused on patient engagement and creating transformational change through increasing awareness, supporting advocacy, and empowerment.
EURORDIS knows that there are huge challenges awaiting it in the next 20 years, and the landscape is likely to change so much more. However, this powerful and motivated organization is not easily deterred, which is why the last 20 years were so successful.
Thus, EURORDIS is nothing but hopeful and excited for the future, citing even though its patients are rare, they are strong together.
