Jean Campbell reflects on why the patient voice needs to be not just heard but listened to, acknowledged, respected and included in all important conversations about rare diseases.
As the end of February nears, I frequently ponder a question made popular in the classic song, What a Difference a Day Makes? In the case of the rare disease community, that last day of February, has made an amazing difference.
I am convinced that when Yann Le Cam, CEO, European Organization for Rare Diseases (EURORDIS), came up with the brilliant idea to designate the last day of February as Rare Disease Day, he did so believing it could gain momentum. Surely he had to hear that the 29th of February is considered a day of awakening and awareness; one when individuals are encouraged to be energized to explore possibilities. What an apropos depiction of and connection to the international rare disease community.
It was by taking that quantum leap of faith, that EURORDIS and 19 members of the European National Alliances launched Rare Disease Day on February 29, 2008 harnessing the uniqueness of this special day to introduce the rare disease community to the world. And they never looked back.
In 2009, EURORDIS went international with this novel idea when they invited the National Organization for Rare Disorders (NORD) to be the official US host. By 2016 there were 85 countries representing 6 of the 7 continents celebrating Rare Disease Day.
With each passing year, be it the 28th or the coveted 29th, Rare Disease Day has inspired individuals and organizations to create activities that would increase the visibility of rare diseases by educating an ever-growing audience of family, friends, co-workers, researchers, healthcare professionals, legislators, media, corporations and even strangers on the challenges that accompany a rare disease diagnosis. There has been a steady increase in the number of special events hosted by the ever-growing list of patient organizations, academic institutions, government agencies and companies from countries around the world.
You may ask, what are the differences that this day makes? It’s bringing to the forefront the need for faster diagnoses, increased scientific research, greater interest in the development of treatments, recognition for appropriate legislation benefiting this community and the importance for collaborations among all of these entities. There has been a leveling of the awareness field for many rare disease patient organizations who have been tirelessly working for many years on behalf of the lesser known orphan diseases. It has validated what those of us who have worked alongside this community have known for years: the patient voice needs to be not just heard but listened to, acknowledged, respected and included in all important conversations about rare diseases.
So, as the global rare disease community makes plans to celebrate February 28, 2017, I need to give kudos to EURORDIS for taking that glimmer and turning it into a remarkable reality. For with that bold move, the last line of that classic song, “What a diff’rence a day made, and the difference is you” definitely applies to you!