Date: 01/24/2020

Saturday, February 29 is World Rare Disease Day 2020!

We are the 300 Million    

World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

In previous years, a huge variety of events have taken place across America from an inclusive online music campaign to make a compilation of songs to unite a global community, to races both in real time and virtual. High-School students with rare diseases have organised events at their schools and spoken in assemblies to raise awareness and the ‘Beyond the Diagnosis’ art exhibition also placed patients at the heart of the day.
For events in the US, please submit your information to the US specific website for Rare Disease Day:

World Rare Disease Day will be held on Saturday, February 29, 2020. On this day, various activities take place in the United States, Europe, Russia, Japan and around the world to raise awareness for rare and genetic diseases, and to raise donations for the foundations that support and serve these communities. Many individuals plan special events on February 29th,  large and small, to support the cause and show they care.

How To Get Involved

In support of Rare Disease Day and NORD, the official US sponsor, FIRST encourages you to join patients, families, friends and caregivers, to promote awareness and education of ichthyosis and related skin types, on Saturday, February 29, 2020. You can also access the international Rare Disease Day site, for even more fun ways to get involved and raise awareness, like making your own video, sending a photo, or writing a story. Perhaps you can even write a letter to your local or state representative, informing and educating them about your rare skin condition and letting them know that you need their support.  Be sure and tell NORD and/or International Rare Disease Day about your plans for RDR, and they’ll tell the word through their social media channels!

If you’re posting about RDD, use #NORD #ichthyosis #raredisease #RareDiseaseDay, so that your photo, stories, and events are linked to the global campaign. FIRST will be sure and share your efforts with our social media channels as well!

Here are some easy ways to bring people together, show you care, and have some fun too!

  • Organize a dress down or “jeans” day at work or school (denim ribbons available at Global Genes | RARE Project
  • Run/Walk/Marathon
  • Set up a booth at a flea market or a car show
  • Used clothes/shoe sale
  • Organize a penny challenge or change collection at school, work or in your community
  • Quiz night or game night at your school
  • Host a community get together
  • Host a wine tasting party
  • Organize a fundraiser at a local restaurant for a % of sales
  • Sell items of jewelry, quilts or art
  • Auction
  • Neighborhood Concert
  • Raffle, solicit a large prize and sell tickets.
  • Sell your unwanted gifts on E-bay
  • Ask to give out information about FIRST and ichthyosis at your local church, firehouse, community center, etc.  You may even want schedule time to educate members of that particular community organization.

Also, when choosing a fundraising activity, remember that friends (volunteers) will perform better if they are enjoying what they are doing.  If they feel what they are doing is successful and making a difference, it will help stimulate their motivation. Most people will enjoy what they are doing if there is an element of fun and visible success. And no one knows your friends, family, and community better than you. So choose something everyone can enjoy!

Remember, promoting your events or sales through social media is a quick and effective way to spread the word and build excitement.

If you’re posting about RDD, use #NORD #ichthyosis #raredisease #RareDiseaseDay, so that your photo, stories, and events are linked to the global campaign. FIRST will be sure and share your efforts with our social media channels as well!

For more information on creating and promoting grassroots events to celebrate Rare Disease Day, or throughout the year,  please contact Christine Wassel at
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