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Show Your Strength. Share Your Story.
Create a Rare Disease Video

Posted by | 6:33pm on Thursday, February 10, 2011

Alnylam Pharmaceuticals has agreed to donate $10 for every video posted (up to $5,000) 

As part of Rare Disease Day 2011, the National Organization for Rare Disorders (NORD) is inviting patients and family members to create a video library of rare diseases. The goal of the project is to educate the public through the stories of people with a variety of rare diseases.

Answer Three Questions
NORD is requesting 30-90 second videos that answer three simple questions:

  1. What rare disease affects you (or loved one)?
  2. How does this affect your (or their) life?
  3. What advice would you give to other people affected by this disease or another rare disease?

The videos will be posted to the NORD YouTube channel and help to increase public awareness.  To see a few example videos, go to http://youtube.com/raredisorders. Videos should be uploaded via the RareDiseaseDay.US site.

“We hope that these videos will capture what it is like to live with a rare disease, and collect a visual library of experiences,” said Mary Dunkle, NORD’s vice president for communications. “We know how remarkable individuals in this community are; now we want the world to hear and see it!”

Extra Inventive: Your Video Will Help Raise Money
Alnylam Pharmaceuticals has agreed to donate $10 for every video posted (up to $5,000) to help support NORD’s educational programs. Rare disease community: we encourage you to please share, in your own words, how a rare disease affects you and your family.

To learn more about Rare Disease Day, celebrated this year on February 28, 2011, go to RareDiseaseDay.US or Facebook.

(Image courtesy of Phil Roeder on Flickr.)

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

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