While all the buzz this morning may be about last night’s Oscar winners, it’s a very important day for patients worldwide. Today is International Rare Disease Day, organized by EURODIS and the National Alliances of Patient Organisations. Hundreds of organizations in over 40 countries around the world are using the slogan “Rare But Equal” to raise awareness of the millions of people affected by rare diseases.
In the US alone, 30 million people are affected by rare diseases. Sponsored by The National Organization for Rare Disorders (NORD), Rare Disease Day efforts in the US include the following:
- A “Write Your Rep” campaign to encourage members of the U.S. Congress to join a new Rare and Neglected Diseases Caucus that will provide an important forum for discussion of issues related to rare diseases and orphan products
- Creating a database of physicians withexpertise on specific rare diseases (nominations are welcome from all for this international database)
- Creating a “Rare Disease Video Library” of 1 to 2 minute Flipcam-style videos made by patients or family members to post on YouTube and theUS website
- A Medical Foods Conference on February 10 in Washington DC to address issues related to accessing the special foods required as treatments for certain metabolic disorders and other rare diseases
- An event at the National Institutes of Health Clinical Center
- A “Do a Designation Workshop” hosted by the U.S. Food and Drug Administration at the Keck Graduate Institute
- A scientific conference at the Sanford Research Institute in California
As healthcare communicators, our jobs go far beyond marketing treatment. As we continue to talk about empowering and support our patients, we should have the humility to realize that we can’t do it alone. Events like International Rare Disease day remind us that a dose of thought leadership and a dose of collaboration equal a cure.
At Pixels & Pills, we don’t just talk about making a difference in healthcare through technology – we believe in action. That’s why we built the Health Tweeder. It’s why we held a phone drive at the ePharma Summit this year. And it’s why we’re calling on each and every one of you to support this cause. Let us know what you’re doing to promote awareness for rare diseases!
