Rare Disease Day 2013: A Two-Day Event

 I’ve been tweeting about #RareDiseaseDay2013 for the past two days.  The Rare Disease Day awareness campaign continues with events being held across the globe.  Check out these events at the National Institute of Health:

Rare Disease Day at NIH , retrieved from http://rarediseases.info.nih.gov/RareDiseaseDay.aspx

As noted on their website, the NIH “will celebrate the sixth annual Rare Disease Day with a 2-day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; and the Genetic Alliance. Rare Disease Day at NIH (RDD@NIH) will be held in the Natcher Auditorium (Building 45) from 8:30 a.m. to 5:00 p.m. on Thursday and from 8:30 a.m. to 4:00 p.m. on Friday. Attendance is free and open to the public.” 

The Global Genes Project is another great promoter of Rare Disease Day events.  Check out the information on their website for more ways to support Rare Disease Day in your community:  http://globalgenes.org/

The Global Genes Project is “a leading rare and genetic disease patient advocacy organization led by Team RARE (Rare advocacy, Awareness, Research, Education) and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes RibbonTM.”  Retrieved from http://rarediseases.info.nih.gov/RareDiseaseDay.aspx

7000 rare diseases exist globally.  80% of rare diseases are linked to faulty genes.  Where did I learn this information?  @GlobalGenes, of course!  Check it out and get involved in the Rare Disease Day awareness campaign!  If you are living with a rare disease and want to share your personal story with the world, here’s your chance:  http://www.rarediseaseday.org/yourstory

Needing some inspiration?  Check out the stories from rare disease patients, care providers, and supporters at http://www.flickr.com/photos/31585490@N05/    Here’s my personal rare disease story, http://www.flickr.com/photos/rarediseaseday/8517400330/in/photostream 



Rare Disease Day, February 28 and March 1, 2013

Rare Disease Day, February 28 and March 1, 2013

2 thoughts on “Rare Disease Day 2013: A Two-Day Event

    • Hello, hopeforheather,
      Thank you for your kind words about my post. I clicked on the link for your blog, and I must say to you, “Great job for raising awareness about 2 rare diseases that I am unfamiliar with!” I’m always amazed at the connections I continue to make as I journey forward with AIH and Hashimoto’s. I know you can relate. Take good care of yourself, and I hope you’ll continue to follow and comment, often. I’m following you ;).


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