Chronically Awesome: A Proud Rare Disease Day Partner
February 28, 2017, is the 10th Rare Disease Day
An International Event
Rare Disease Day is the day that patients and their families & caregivers, as well as patient advocate organizations, politicians, medical professionals, researchers, and related industries, come together to raise awareness of rare diseases through thousands of events all over the world.
Since it’s European founding by Eurordis, Rare Disease Day has reached the goal of becoming an international event. 37 countries (creating 39 national alliances), has achieved the astounding feat of having at least one event per continent. National Alliances ensure the coordination of Rare Disease Day at each county’s national level. Rare Disease Day events vary from galas, backyard parties, and the collecting of patient stories. Each event created with the goal to raise more funds and increase research on rare diseases.
Here in the US, The National Organization for Rare Disorders helps local groups and organizations sponsor national events. The Chronically Awesome Foundation will also be sponsoring a national event.
“The number of participating countries has increased year-on-year, with thousands of events taking place on all continents for Rare Disease Day 2016. In total, events have taken place in over 100 countries since 2008. Previous years have played witness to events such as Rare Disease Day barbecues on beaches in Australia, to scientific symposiums in Bahrain.
On Rare Disease Day in 2013 the number of tweets that were talking about rare diseases reached 17 per minute, and in 2015 the Rare Disease Day official Rare Disease Day official video was viewed by 1.5 million people on Facebook alone.”
Chronically Awesome and Rare Disease Day
As a Partner with NORD, The National Organization for Rare Disorders, The Chronically Awesome Foundation is collecting your Rare Disease stories.
The Chronically Awesome Foundation has created an event that, in concert with our mission of creative expression, allows you to join patients around the world who advocate for research by sharing your story. The powerful stories of the rare disease patient is already a powerful tool that has helped to steer research toward rare diseases. We want the Chronically Awesome Community to be a part of that power, we want you to be a part of that power.
Patients have and will continue to make a difference.
We want your stories, we want your creative work. The power of your words will create possibilities and possibilities are limitless!
Between now and February 27th, The Chronically Awesome Foundation is accepting creative submissions that represent your “Rare Disease Story”. This event will be published on the NORD event calendar for Rare Disease Day, your story will be read or seen or heard. You will make a difference, the possibilities are limitless!
We will accept:
- Short Stories
- Videos (Embed links to YouTube)
- Photographs or Collages
- Images of creative work: paintings, sculpture, etc.
- Music (email to discuss submission)
Email your work to firstname.lastname@example.org*
We look forward to reading and publishing your “Rare Disease Story” on February 28th. Sharing your story with the entire Chronically Awesome Community as well as lawmakers, policy makers, research and industry stakeholders will begin on Rare Disease Day and continue beyond that date.
While we celebrate the efforts of patients on Rare Disease Day and shine a light on the illnesses that are often in the dark, the work does not end on March 1st. The efforts of NORD, Eurodis, and all of the Rare Disease Day partners will continue.
Want to join hands with other Rare Disease patients? Submit your photo and Raise And Join Hands HERE!
*Your stories are real, rare, and your own and will not be edited. We cannot, however, accept work that is deemed
“pornographic”. (Each work will be judged on an individual basis, nudity is not excluded but will have to be approved.)
Please enter your name and “sign” this release ca_publicityRelease and return it with your submission.