Last updated 24 Aug 2018, 02:10 PM
“The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others”
– DeAnn Hollis.
Even though there are 7,000 known rare diseases with over 300 million people affected, patients around the globe feel alone. Enter RareShare, a platform created to build a sense of community for those affected by rare diseases. RareShare was founded in 2008, later becoming a part of the Rare Genomics Institute. Through the years, it has operated solely through a dedicated volunteer team.
Volunteers want to make a difference for people dealing with a rare disease by facilitating their connection to others in the world experiencing the same situation. “I want to help distribute useful and hopefully life-changing information that patients wouldn't otherwise have access to via podcasts and other easily accessible methods,” says one team member. Another explained, “Volunteering for Rareshare is a way of outreach. The content is important and will be read by the public, which motivates me to dedicate my time to the site and reach as many individuals as I can to make a difference in their lives.”
Whether you are a patient, family member, friend of family, researcher or healthcare professional, you are invited to use RareShare. Looking ahead, the team aspires for RareShare to become one of the major aggregators of information about rare disorders on the web. The dedication, commitment and enthusiasm of each RareShare team member makes the site what it is today!