A week after the 14th edition of the global Rare Disease Day, what remains of it? LinkedIn and other social media experienced an expected outbreak of communications activities, hearty corporate commitment and engagement messages. Then the international news flow imposed its ever-changing agenda. Today’s comments have strayed away from rare diseases.
Created in 2008 by EURORDIS and dozens of patient organizations, Rare Disease Day has unquestionably played a critical role in raising awareness on conditions too rare to get public interest, or patients too isolated to get appropriate attention. This was a salient move for the time. One that enabled rare diseases advocacy to progress on local, national and international levels.
But to keep being salient, one cannot simply rely on repetition. Habitus is the bed of indifference. At a time where diversity and inclusion has finally become a legitimate goal for many organizations, why do we keep using the mass market approaches that caused uniformization, standardization… and the denial of differences? There must be other ways to motivate a community. Other channels to reach out to the effective stakeholders. Other programs to trigger action or new behaviors.
For patient organizations and Pharma companies, investing their communications efforts simultaneously on a single day or month may appear as a sign of helplessness… and a loss of opportunity. Staying on the surface of things prevents the transformative action that the beneficiaries need so much.
By the way… March is the international awareness month for colorectal cancer… and multiple sclerosis, and colic, and brain injury, and kidney health, and trisomy…