World Rare Disease Day Wrap-Up: The History

January 1, 2014

Now that you’ve had a second to ring in the new year, it’s time to start preparing for that event you’re going to have for World Rare Disease Day 2014–which is coming up right around the corner! Don’t worry, Global Genes has you covered. Recapping our webinar, we’ll take you through planning and preparation, event ideas, getting the most out of social media and spreading awareness for your disease in the most creative way possible! Ready? Great! Let’s start with some background info on where World Rare Disease Day came from.

• First launched by EURODIS and its partners in February 2008*
• Over 70 countries participated in events in 2013*

Why February 28th this year?
• Rare Disease Day is held on the last day of February
• Celebrated February 29th, the rarest day of the year

Raise general public, media, industry, and legislative awareness for:
• Rare and genetic diseases
• Improved access to treatments and therapies
• Improved physician understanding of rare and genetic conditions
• Public support for the millions of people fighting rare diseases

* Facts provided by

Blue Denim Genes Ribbon™:
Global Genes promotes its mission with a unifying symbol of hope. Considered the universal symbol for rare and genetic disease awareness, this ribbon helps unify a fractured community of thousands of small diseases that lack a collective voice.

• 2012: 45,000 ribbons were distributed
• 2013: 100,000 ribbons were distributed
• 2014: 150,000+ ribbons anticipated

Social Media

Global Genes will promote two #hashtags leading up to World Rare Disease Day 2014 to raise awareness for rare and genetic diseases:


We encourage partners, advocates, and supporters to include these #hashtags in press releases and other materials to employees or their constituents to use on World Rare Disease Day 2014.

Download graphics from

• Instagram and Twitter: #CareAboutRare, #WRDD2014,
• Facebook profile pictures and photo sharing

Word Rare Disease Day Event Types: 

• Educational institution (school, university, etc.)
• Community (public, family, club, etc.)
• Business (small and medium sized)
• Corporate (large businesses)
• Legislative (federal, state, and local awareness


• Patient specific
• Specific disease
• General rare disease community

• Who does the money go to?
• Rare disease specific organization
• Support organization (non rare disease specific)
• Patient’s family
• Global Genes | RARE Project
• If supporters wish to make a tax-deductible donation, receiving organization must be 501(c)(3)– use Guidestar or Charity Navigator to verify
• How will the money be collected?

Other Considerations:
• Permit or other type of authorization needed to host event
• Publicity: how to spread the word about your event

Thanks to Carrie Ostrea and Katie Mastro for this recap! Tune in for part 2 where Julie Cunningham takes us through education and business event ideas.

Remember, you can always see the full webinar on our main site here.

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