Raising Awareness of Rare Diseases

Nonprofits across the globe are using Rare Disease Day (#RareDiseaseDay) to promote their organizations and help bring awareness to the millions of Americans suffering from over 7,000 rare disease.


Rare Disease Day is Friday, February 28. Coordinated by The European Organization for Rare Diseases (EURORDIS) and several National Alliances and Patient Organizations, the day is dedicated to raising awareness for rare diseases and the ways in which they impact the lives of those who suffer from them.


In the United States, a rare disease is classified as a disease or disorder currently affecting less than 200,000 Americans. Because smaller amounts of people are affected by these diseases, they have a significantly lower awareness level, resulting in smaller amounts of funding.

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This year on Rare Disease Day, nonprofits across the country are taking advantage of the day to raise awareness for their causes.


The Global Genes Project is utilizing social media to communicate their awareness efforts for Rare Disease Day. They have created personalized profile pictures available for download, encouraging the public to upload them to their favorite social media platforms with the use of hashtags #CareAboutRare and #WRDD2014.


Reflections of Grace Foundation works to raise awareness about a rare pediatric brain tumor called Diffuse Intrinsic Pontine Gliomas (DIPGs) and to  provide funds to those affected, as well as researchers. The disease has not received increased funding since it was defined in 1984 so Reflections of Grace Foundation raises funds through fundraising programs, merchandise sales, donations, and events, such as the 7th Annual Race For Grace spotlighted by Rare Disease Day. The organization is partnered with The DIPG Collaborative, which is a collection of similar foundations looking to cure DIPG through joint endeavors and education.


Hunter Syndrome Foundation is having a Zumba marathon that will raise both awareness and funds for the rare genetic disorder, Hunter Syndrome that slowly destroys the body’s cells.


Chromosome Disorder Outreach (CDO) is also bringing awareness to rare diseases by teaming up with TGI Fridays. Customers can pick up a special flier at the informational table in the lobby and present it to their waitress, allowing 20% of their bill to be given to CDO.


Soft Bones is also getting involved with this year’s Rare Disease Day. The nonprofit, which seeks to raise awareness for a rare bone disease called hypophosphatasia is having a two day event where specialists speak on the disease and provide a Q and A section to the audience. Their aim is bring more awareness to the disease, resulting in additional funds to help find a cure.

Here are some examples of how other organizations associated with rare diseases are getting the word out.


• EURORDIS provides 6 ways to participate in Rare Disease Day 2014.


• Rare Disease Day’s interactive map shows events in various geographic areas.


About the author: Rachel Mende, intern at New Place Collaborations, is a senior at the University of Pittsburgh. An admitted cheeseburger and Chipotle enthusiast—and reality tv show junkie—Rachel aspires to be a public relations professional.