From Jorge D Faccinetti, co-founder – Today is Rare Disease day. It is encouraging and gratifying to see the many organizations that participate by acknowledging the day. Thank you for mentioning Rare Disease Day in your respective social media feeds, blogs, websites, and advocacy groups. The thousands of impressions we collectively deliver, with around 7000 rare diseases and the many, many people working to find better therapies and outcomes for patients, is a crucial way to help get the word out.
We want to acknowledge the hard work from so many people with a collective thank you from the bottom of our collective hearts. I wish we could mention them all, but that would make this a very long article, indeed.
Interestingly, curiosity took me to research other national and international global days. A quick search yielded hundreds of directories to name and celebrate your favorite activity. Here are a few. It was amusing to learn that according to the national day calendar, there are hundreds of national and global “Days of Something” every month. For example, the calendar lists 118 February holidays: from “National home-made soup day” to “National clear out your computer day” to “National shower with a friend day.” On February 28th, Rare Disease Day competes with, among others, National Chocolate Soufflé Day, Car Keys and Small Change Day, and National Public Sleeping Day.
These are funny and light celebrations that reminded me that posting a rare disease message is essential for awareness but it is also critical to work on initiatives that broaden the message to audiences outside the rare disease sphere.
Rare Disease Day offers a great reminder that we are all in this together. Connect with us to learn how we improve access to care, the cost burdens of a rare disease, and tackle the many unmet needs in this community. We invite you to get in touch and work with us to help solve the many issues in front of us.
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