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Feb. 28, 2015

TOPIC: Uncategorized

Today is Rare Disease Day 2015

Posted by Christina Jensen
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Rare Disease Day is here!  Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.

NORD is proud to work with our partners as the official sponsor of Rare Disease Day in the U.S.  Here are a few ways you can get involved to help make this the most impactful Rare Disease Day yet.

Social media awareness – Together we can grow awareness. Change your profile picture to the ”I SUPPORT Rare Disease Day” badge (pictured) and encourage others to do the same.  Share photos, updates and videos using the hashtags #RDD2015#RareDiseaseDay and #1in10.  You can find us on Twitter @RareDayUS, Facebook /RareDiseaseDay.US and instagram @rarediseasedayUSTag us in your photos so we can find you, retweet, and help you spread the word.

Handprints Across America™ – Tell your story:  how does rare disease touch you?   Upload photos with the Handprints Across America sign to the 2015 gallery (details here). You can include photos of yourself, family members, and group shots from school, work or your organization.

Events – Events are happening across the country. Attend, spread the word, and connect with others, http://rarediseaseday.us/events/events/.

Children’s activities – Two-thirds of America’s 30 million rare disease patients are children.  You can involve kids with coloring sheets and other activities.  Rare Disease Day Ambassador 2015 Sean Hepburn Ferrer, whose mother Audrey Hepburn died from a rare disease, has written a new children’s book, MAURICIO OF URUGUAY, to help explain rare diseases to children.

Education – Are you a student or medical professional interested in learning more about rare diseases, diagnosis and the challenges of rare disease patients?  Take a look at the fact sheets and share with your colleagues.

Talk with elected officials – Let your legislators know rare diseases are a priority.  Send an email as easily as entering your zip code.

Spread the word – We’ve created colorful infographicsvideos, and printable handouts that you can download and share from our website.

Join the media campaign – On our website you will find downloadable press release templates that are easy to customize to help you share you story, event, and role as a RDD supporter.

Donate  – Until 11:59 p.m. tonight, with every click on RAISE YOUR HAND on the Rare Disease Day U.S. website, Lundbeck with donate $1 (up to $10K) to a NORD research fund. On March 3, many nonprofit organizations in the rare disease community will participate in a new annual day of giving, Give Rare. To make a gift or sign up as an organization, visit the Give Rare website.

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