Time to Rare Up

Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing over 7000 rare diseases join forces to raise awareness. The movement began in Europe in 2008 thanks to EURORDIS with 65 countries now adding their voices.

 rarediseaseday.orgThe theme for Rare Disease Day 2018  is RESEARCH

You may be wondering what you can do as an individual to show your support. RareDiseaseDay.us is offering everyone the opportunity to take part in this year’s social media campaign Handprints Across America®.

They ask patients, families, and friends to print out the Handprints Across America flyer and take a photo of yourself, your family, your friends, your colleagues, fellow students, or others, holding it. Share it on Instagram or Twitter with the hashtag #HandprintsAcrossAmerica, #RareDiseaseDay, and #YourDisease (#SuperficalSiderosis). Your photo will be included in a group stream dedicated to showing the world the faces of those impacted by rare and chronic illness.

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About Rori and Gary

Our life after Gary’s diagnosis of superficial siderosis. We share our thoughts on how we deal with the clinical symptoms and life changes that come with a chronic illness.

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