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Rare Disease Day 2021

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FPA to Participate in Rare Disease Day February 28th 

On February 28, 2021 the Facial Pain Association will join the global community in raising awareness about rare diseases. Founded in 2008 by EURODIS and its Council of National Alliances, Rare Disease Day is a grassroots campaign led by people and patient organizations that bring together millions around the world. 

Rare diseases are serious, complex, usually chronic, often life-limiting and most have no cure. The irony of rare diseases is that many people have them, and we share common experiences with the difficulties we face. People with rare diseases struggle getting appropriate diagnoses and care. There is usually a lack of research on rare diseases, especially those that are not fatal. Having a rare disease can be isolating for the nearly 300 million people living with one of the more than 6,000 identified rare diseases. 

FPA invites you to join us as we raise awareness about the rare conditions faced by the neuropathic facial pain community. On February 1, 2021 FPA launched a Facebook frame with the phrase, “I am the face of facial pain.”  To add the frame to your profile picture:  

Go to www.facebook.com/profilepicframes 

Search for the frame “FPA Rare Disease Day” and select it from the options. Click “Use as Profile Picture” to save. Throughout February, FPA will be sharing facts about facial pain on social media. Please feel free to share our posts on your personal social media as we work to educate others about rare diseases. 

On February 28th, we invite you to share your #RareDiseaseDay story on your social media and tag the Facial Pain Association. 

Your story is our storyParticipants in the Rare Disease Day event may have their photo and story shared in future FPA content.

Brandi Underwood, FPA Marketing and Communications Manager