While the number of patients with any individual rare disease is relatively small (less than 200,000 in the U.S., as defined by the Orphan Drug Act of 1983), they collectively affect 1 in 10 Americans. The community successfully comes together to raise awareness on international Rare Disease Day every February, but the challenge is how to maintain the momentum – and remain united - for the remaining 364 days of the year.
Global Genes has been tackling this challenge since 2009, with a mission that centers on unifying and empowering the rare disease community. It is fitting that our next guest blog in the series on collaboration in rare diseases is from Andrea Epstein, Executive Director of Global Genes.
You can find the first two guest contributions in our series here (by Dr. Stephen Groft of the Office of Rare Diseases Research at the National Institutes of Health) and here (by Peter Saltonstall of the National Organization for Rare Disorders).
On the heels of the 7th annual World Rare Disease Day, rare disease stakeholders from across the globe gathered in places of business, at events, in schools, places of worship, all in an effort to build awareness collectively for rare disease, a cause affecting over 350 million people worldwide. This has become the most successful campaign ever for rare diseases because it was the first truly collaborative effort, allowing individuals and organizations to become part of the global campaign while making their local efforts their own. Collaboration for rare disease is progress, collaboration is essential, and collaboration is what will help drive new successes for the rare disease community now and well into the future.