This Wednesday, the last day of February is internationally-recognized Rare Disease Day – a day when we realize that in fact – rare diseases are not so rare.
There are 7,000 rare diseases and disorders that affect about 30 million Americans – more than half of that number being children. Three hundred million worldwide are affected by rare diseases. Another number to recognize is that 95% of those with rare diseases don’t have treatment options or cures.
So just because it’s rare, doesn’t mean you’re alone!
EURORDIS sponsored the first Rare Disease Day in Europe on February 29, 2008. The United States joined the first global observance the following year, along with 23 other countries.
According to the National Institute of Health’s NCATS, the goals of Rare Disease Day are to:
- Demonstrate and reiterate the NIH’s commitment to rare diseases research
- Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
- Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates, and policymakers.
- Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
Notice the ongoing theme here?
RESEARCH!
Because the 2018 theme is in fact: research. And it makes sense – research into rare diseases is key to understanding what may cause it, how to prevent it or reduce affects of it, and ultimately how to cure it.
So while the heavy lifting of research falls on the scientists, pharmaceutical industry, and government to collaborate on solutions, we too can play our part to amplify our voices!
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If you are part of an organization that tackles a rare disease, sign up here to join the worldwide campaign.
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If you or your organization is planning some event, register the event here so more people can get involved!
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Time to show off your social media game by participating in “Show your rare. Show you care.” Post an image or selfie on any social media platform with your face painted and include the hashtags #ShowYourRare, #MyRare or #RareDiseaseDay.
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Share your story by uploading a photo or video here. Those with rare diseases sometimes may feel isolated – so sharing your story can help others not feel so alone.
Ultimately, there is no wrong or one way to show your support. Whether you start a conversation with someone about a rare disease, make a donation somewhere, or even educate yourself on a rare disease you perhaps haven’t heard about before – every bit helps!
