Millions Around World to Observe Rare Disease Day

Jim's Corner

On Sunday, Feb. 28, millions of people around the world will observe “World Rare Disease Day”. This is an annual event sponsored in the U.S. by the National Organization for Rare Disorders (NORD) and in Europe by the European Rare Disease Organisation (EURORDIS).

Plans for the day—and the days leading up to it—include awareness events sponsored by patient organizations, a rally organized by pre-medical students at the University of Connecticut, a scientific symposium at the Sanford-Burnham Medical Research Institute in California, and educational events hosted by companies including BioMarin Pharmaceutical, Inc., Genzyme Corporation, Alexion Pharmaceuticals, Inc., and ViroPharma, Inc.

NORD has organized “grassroots” activities such as obtaining state proclamations, a Hall of Fame for researchers, a contest in which patient organizations can win Flip-type camcorders donated by Shire, and a “Raise Your Hand” for research campaign in which Lundbeck Inc. will donate $1 to NORD’s general research fund (up to a total of $10,000) for each click on the symbol.

While many “real” events are planned, much of what will take place is virtual and online, making good use of the social media.  The Raise Your Hand symbol, for instance, can be shared with friends and family through media such as FaceBook and Twitter.  NORD has launched its own FaceBook and Twitter campaign with assistance from Siren Interactive, a company with expertise in that area.  EURORDIS also has created an extensive FaceBook and Twitter global presence in coordination with NORD’s efforts in the U.S.

Seeing the many patient stories and videos that are being posted related to this effort is definitely a “feel-good” experience.  But do these types of special days really accomplish what is intended?

Based on NORD’s experience, this one does.  While people may be a bit weary of the endless special days, weeks and months in support of more predictable causes, World Rare Disease Day somehow drives the message home in a way that other advocacy days do not.

Maybe that’s because of the nature of the message—that “rare” diseases aren’t really so rare if patients, their friends and families are coming out of the woodwork to chat, tweet and post about their experiences.  It’s one thing to say that nearly 30 million Americans, and 30 million Europeans (with millions more around the world) have rare diseases.  To read the poignant postings from these people is quite another thing altogether.  It allows us to feel their pain in a way a press release could never do.

NORD has been collecting patient stories over the past several weeks as part of its Rare Disease Day observance.  Those stories won’t all be published now, but we will find opportunities to use them in the future because they describe what it’s really like to live with these terribly disabling, isolating, and financially disastrous diseases.

Our hope is to use the momentum from this day to build a year-long educational and awareness campaign with emphasis on one of the central themes of Rare Disease Day:  Millions of people have rare diseases for which there still is no treatment.  More research is needed.  Everyone deserves hope.

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