Join Us in Making the Voice of Rare Disease Patients Heard

By Abbe Steel, CEO
HealthiVibe, LLC

RDDToday, February 29, is Rare Disease Day.  It’s an opportunity for all of us to come together to raise awareness of approximately 7,000 rare diseases, which, together, affect tens of millions of people worldwide.

This year’s slogan, “Join Us in Making the Voice of Rare Diseases Heard,” puts a special emphasis on the patient voice.  At HealthiVibe we’ve made capturing the patient voice the cornerstone of our mission, helping clients improve their clinical design process through a better and deeper understanding of the patient. And we believe it’s our responsibility to be good stewards to our rare disease population, which has been traditionally underserved by the medical research community. More than 95% of all rare diseases in the U.S. have no FDA-approved treatment.

As the organizers of Rare Disease Day point out on their website, rare disease sufferers have become experts in their own diseases and care. Their input is an invaluable resource in aiding clinical understanding of their disease, and it’s important that researchers make use of that resource and allow the patient voice to inform every step of the research and development process. Doing so will help bring about new and better treatment options more quickly.

We encourage you to listen to these patients, their advocates and caregivers in order to understand their special needs and challenges. Take some time to learn more about some of the diseases under the Rare Disease classification. Watch patient videos and read a few patient blogs. And visit the Rare Disease Day Website and USA Today’s special rare disease insert, in print and online, to learn more about how you can make a difference.

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