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Apr. 7, 2016

TOPIC: Events, Featured News, Get Involved, Industry

Introducing the 2016 Rare Disease Day® Highlights Video

Posted by Christina Jensen

Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day®.  This is the one day that everyone comes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans–or 1 in 10 of us–and millions more around the world. NORD is proud to be the U.S. sponsor of Rare Disease Day to help raise awareness and spread the word about rare diseases. Without partners and supporters like you, Rare Disease Day would not be this successful. Thank you for your support, thank you for helping us heighten awareness, and hopefully every Rare Disease Day will lead us toward more cures.  Thank you all for your support.


Now that Rare Disease Day 2016 events have finished and the numbers are in, let’s celebrate everything we accomplished together to make the voice of rare diseases heard.  Take a look at (and share!) this year’s highlight reel & recap.
  • Together, we planned and hosted 37 State House Events across the U.S., up from last year’s 32 State House Events
  • Advocates in all 50 states worked to get a state-issued proclamation for “Rare Disease Day”
  • The Senate passed a resolution declaring Feb. 29, 2016 “Rare Disease Day”
  • Hundreds of advocates convened at the National Institutes of Health and in Washington, D.C. to advance progress for rare diseases
  • More than 2,100 people and 279 state legislators & staff attended the State House Events, which featured participants from 202 organizations, 197 patient & caregiver speakers, 81 state legislative speakers, and 26 medical professional & industry speakers
  • #RareDiseaseDay: we achieved greater awareness through social media by working together to make the official, global hashtag trend on Twitter for the first time and on Facebook for the second year in a row
  • 4,000+ people shared photos and stories in the Handprints Across America® campaign
  • The official, global video was translated into 20+ languages
  • 85+ countries joined in solidarity with Rare Disease Day founder, EURORDIS, to make the voice of rare diseases heard, including first time participants Andorra, Aruba, Indonesia, Libya, Mauritius, Moldova, Tanzania, Tunisia, Uganda and Zimbabwe
We will not stop fighting for the 30 million Americans who are living with rare disease. In 2017, our efforts will be louder and stronger! We need your help!
Tell us what you hope to accomplish in 2017, sign up to receive news and updates,
and start planning today! 

2 Responses to “Introducing the 2016 Rare Disease Day® Highlights Video”

  1. The Best feeling in the world to united with our amazing Rare friends from Ohio state. Ethan’s speech was such an inspiration to all people who is suffers from rare disease. Thank you NORD for your support. We are coming back in 2017 and we will grow stronger.

  2. Great video! So happy to see how many people spend their time to come and support each other! It’s especially incredible when people meet someone with the same disease the first time in their life’s. You see the tears of joy when you realize that you are not alone in this lonely horrible fight against your rare one in a million disease. In our case that would be Bartter syndrome ! Thank you from Ethanscure. Ohio state.

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