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Share Your Rare Story for Rare Disease Day 2017

February 3, 2017

Rare Disease Day will be celebrated across the globe on February 28, 2017. For those living with Chronic Granulomatous Disease (CGD), it’s an opportunity to share what it’s like to live with a very rare disease – the struggles, the isolation, the connections and the triumphs, hopes and dreams.

Horizon Pharma is getting ready to launch a campaign on Rare Disease Day, and it’s called “Rare Is.” The campaign will encourage sharing on social media to engage the public about what it means to live with a rare disease.

Below is information Horizon shared around how you can participate:

  • Complete the phrase “Rare Is.” For instance “Rare is Empowering,” “Rare is Scary,” “Rare is Beautiful,” “Rare is Hope.” The idea is to express what it means for you and/or your family to live with a rare disease and be part of the rare disease community.
  • Write your “Rare Is” statement—feel free to write yours on a piece of paper, or use your iPad. Use multiple words, draw a picture—get creative!
  • Take a picture of you, your family or your loved one holding the sign. Here is an example with TZ the IDF Zebra, the official IDF mascot:

  • E-mail the picture to Gail Moore at Horizon Pharma: Consider including a few sentences in the e-mail about what your “Rare Is” statement means. Please try to send these to Gail by February 10, but they will accept later submissions as well.
  • After receiving your photo, Gail will follow-up with you and ask that you send a consent form to share your photo externally

Beginning on Rare Disease Day, Horizon will begin to post photos created as part of this effort via social media channels.

Please consider joining and sharing what “Rare Is” to you and your family.

Living with CGD is a program of the Immune Deficiency Foundation. This site is made possible by an unrestricted educational grant from Horizon Pharma.

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