World RARE Disease Day shines a light on rare disease community

February 27, 2017 Erin Righetti

 

Today is the 10th annual World RARE Disease Day. Various activities are taking place all over the United States as well as countless locations around the world.

World RARE Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases, in hopes of improving access to treatments and medical representation for individuals with rare diseases and their families.  Global Genes is one of the leading rare disease patient advocacy organizations worldwide and a consistent supporter of this important day of awareness.  Since 2009, Global Genes and hundreds of patient advocacy organizations around the world have engaged in awareness raising activities developed by Global Genes in support of World Rare Disease Day!

“Unity and Engagement are critical in rare disease and these types of efforts bring together thousands of individuals to help increase awareness and raise the voice of this community in need,” said Nicole Boice, Founder and CEO, Global Genes.  “We have been a proud participant in this day, and work to engage more individuals with and without rare diseases to get involved.”

If you are interested in taking action for the rare disease community this Rare Disease Day February 28, you can:

  1. Be a social advocate for the rare disease community using #WRDD2017 with these social media shareables and rare disease facts. 350 million people worldwide are affected by rare disease and a simple share on social media could create big waves in increasing awareness, funds, and support for the community.
  2. Join the rare disease community, and hear from rare disease patients, caregivers, and advocates on living with rare disease, their trials, their triumphs and the innovative advances in science they are making towards treatments and cures.
  3. Spark a conversation and increase awareness by wearing a Blue Denim Genes Ribbon® and an advocate shirt from Rarehouse with your a favorite pair of jeans!
  4. Educate yourself on rare disease with RARE Webinars, Rare Toolkits, and conferences.
  5. Participate in local World Rare Disease Day events to help raise awareness and learn how to positively impact those with rare disease in your community.

Check out Global Genes’ Rare Disease Day infographic below, to learn more about rare disease.

 

 

 


EBD Group is committed to the rare disease community. To further partnering and collaboration opportunities between leaders from patient advocacy groups, industry, academia and government, the inaugural Cell & Gene Exchange event will be held in Washington, DC May 22–23, 2017. Companies and patient advocacy groups specializing in the cell and gene therapy sector will be gathering to network, exchange ideas, and forge meaningful partnerships to advance the cell and gene therapy sector. Find out more.

 

 

 

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About the Author

Erin Righetti

Editor-in-Chief, Insight

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