Promoting Dupuytren awareness is a cornerstone of making progress toward a Dupuytren cure. The Dupuytren Research Group has been promoting Dupuytren awareness to patients and physicians for the last 10 years through social media, online videos, academic journal articles and textbooks, scientific conferences, and public awareness seminars. We’ve had limited television exposure because our financial priority is the International Dupuytren Data Bank research study.
Our mission and outreach efforts are treatment-neutral. We don’t advocate for or against any current procedure because our goal is research to develop new treatments to avoid the need for procedures. Fortunately, we’re not alone in raising Dupuytren awareness. Hand surgeons provide information about Dupuytren on their websites. So do medical centers and medical information sites such as WebMD.com. Endo Pharmaceuticals hosts the factsonhand.com Xiaflex marketing campaign with celebrity Dupuytren patients Tim Herron and John Elway. All of these efforts – ours and others – are pushing to a tipping point where more people know about Dupuytren than don’t.
We’re not there yet, so the Dupuytren Research Group’s outreach efforts continue on all fronts. For example, when I travel to conferences, when possible, I use the opportunity to give free public Dupuytren awareness seminars in the cities I’m visiting. These inform people about Dupuytren disease and research for a cure and – just as important – let people affected by Dupuytren share their experiences and suggestions in person. I’m participating in a cluster of conferences at the end of this year, and have three US public outreach seminars scheduled: Las Vegas and San Diego in September and Washington DC in October. Details are available at https://www.eventbrite.com/o/dupuytren-research-group-12929845762
This is just part of an overall effort to make Dupuytren a word that people recognize – to get more people thinking and more people supporting research to cure Dupuytren disease. The first step in solving a problem is awareness there is a problem.
Charles Eaton MD
