Why Massachusetts Puts a Growing Importance on Rare Disease Day
2018 marks the 11th anniversary of Rare Disease Day, an annual awareness day that falls on the 28th (sometimes 29th) of February. According to its official website, Rare Disease Day started in Europe and made its way to the US in 2009. In 2017, 90+ countries participated, making Rare Disease Day a truly global phenomenon.
This year’s theme for Rare Disease Day is Research. Many rare disease patients rely on ongoing research for accurate diagnosis, new and improved treatments, and overall benefits to their health and wellness. With the density of biotech and pharma companies in Cambridge, there is a high concentration of regional organizations taking part in research and development for a variety of rare diseases and orphan therapies.
As of 2015, Massachusetts was home to more orphan drugs – either on the market or in late-stage trials – than any other state in the nation. That year, there were ten orphan drugs being developed in the state that would account for an estimated $8.5 billion in local revenue by 2020. Since then, we’ve seen approvals for orphan drugs from Sarepta Therapeutics and several other companies. In fact, the Greater Boston Area is home to multiple companies with top-selling orphan drugs, including Alexion Pharmaceuticals, Vertex Pharmaceuticals, and more.
Building on our state’s collective investment in rare diseases, Rare Disease Day is supported by local organizations both large and small. MassBio’s Rare Disease Day is one example that shows that participating companies are not limited to the pharma industry. Their work illustrates the value of engaging and enlisting the support of policymakers and patient advocates to help increase awareness around rare diseases.
At Cambridge BioMarketing, we are excited and proud to be a part of Rare Disease Day. With dedicated passion and expertise in rare disease marketing and strategy, we see Rare Disease Day as an opportunity to accomplish several things: connect with people living with rare diseases and their families; raise awareness about their courage; and, call attention to the work that their community does to advocate for new research and therapies. We believe these extraordinary patient stories can help to inspire the next generation of scientists and researchers and it’s these stories that help to fuel our work year after year.
Since 2012, Cambridge BioMarketing has been building activities around Rare Disease Day to reach a more global audience. Growing partnerships with local donors to support our Rare in Common documentary and national campaign are recent examples of how we are coming together under a common purpose. This year we’re building on that momentum—The Rare in Common podcast will feature forthright stories from patients, caregivers, and industry thought leaders in the rare disease community. Stay tuned to hear more from us about Rare Disease Day and click here to learn how you can get involved.