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Mar. 20, 2015

TOPIC: Uncategorized

Rare Disease Day 2015 was the biggest and most impactful yet!

Posted by Christina Jensen
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The final 2015 State House Event took place yesterday.  Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel & recap:Together, we planned and hosted 32 State House Events in capitol buildings across the U.S., up from last year’s 12 State House Events

  • Governors in 36 states issued proclamations for “Rare Disease Day”
  • The Senate passed a resolution declaring Feb. 28, 2015 “Rare Disease Day”
  • Nearly 1,500 people and 189 state legislators & staff attended the State House Events, which featured participation from 83 organizations, 85 patient & caregiver speakers, 35 state legislative speakers, and 39 medical professional & industry speakers
  • More than 800 partners joined the movement by signing on to the U.S. Rare Disease Day website & combined forces with advocates in 80+ countriesaround the world
  • Rare Disease Day trended on Facebook for the first time
  • More than 160 people submitted photos & stories to the Handprints Across America™ gallery
  • Millions of people around the world watched this year’s video
  • By working with Rare Disease Day founder, EURORDIS, our efforts helped to make this a truly global event with hundreds of patient organizations &thousands of events on every continent. Several new countries, including Bolivia, Estonia and Madagascar, participated in Rare Disease Day for the first time

With all of our efforts, Rare Disease Day continues to grow!  Thank you to everyone who planned and attended events, joined the social media campaign, changed their profile photos, shared infographics, and got involved.  As the official U.S. sponsor of Rare Disease Day, NORD thanks everyone who came together to support this truly community and group effort.  Together, we are strong!

Keep the Momentum Going

You can help keep the positive Rare Disease Day momentum going by urging your representatives to support the Ensuring Access to Clinical Trials Act.  This bipartisan legislation would help more people with rare diseases participate in clinical trials without fear of losing important benefits or health coverage. Learn more & take action as easily as entering your zip code.

Looking Ahead: Rare Disease Day 2016

Planning is already underway!  So far, 27 states have committed to hosting State House Events.  Join us and get involved – send us an email and visit the website in the coming months.  Rare Disease Day 2016 will take place on Feb. 29, 2016, the rarest of all calendar days.

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