Give RARE Offers New Approach to Fundraising for Rare Disease Patient Organizations

Dan Leonard | February 19, 2015

As Rare Disease Day day approaches, you may be thinking of ways to make the most of the day by highlighting your patient organization, the community you represent, and perhaps hoping to translate that into funding for your group.

In the U.S., Give RARE is a new and innovative approach to fundraising for the rare disease community. The idea is to create a single day, this year Tuesday March 3rd, and designate it as a day to rally around giving to rare disease organizations. Give RARE is a 24-hour online event that encourages everyone to contribute to rare disease non-profit organizations through a single online giving platform. There is no fee for rare disease organizations to participate but they must register on the Give RARE website in order to receive donations.  

Give RARE is the brainchild of Keegan Johnson, father to a son with a rare disease, and former Executive Director of the Prader-Willi Research Foundation. In his words, “…the world is coming together to give to RARE diseases. Although individually we are rare, with 30 million Americans affected by a rare disease, together we are strong. Sign-up your rare disease non-profit, easily raise funds for your cause and get access to win prize funds from our sponsors. On March 3rd, watch the non-profit leaderboards and hourly prize draws as grants will be given out through the day.”

Groups interested in joining Give RARE can go to the website above, or email


  • Was this article useful?
Dan Leonard's picture
  • Share:
  • Twitter