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RareShare Team Spotlight

Publication date: 24 Aug 2018

“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.

RareShare consists of over 900 different rare disease communities, where individuals can learn, celebrate, empathize and share their experiences and knowledge to help others.  This incredible initiative wouldn’t be possible without the countless hours devoted by the RareShare team.  The team is comprised of about 20 enthusiastic individuals with strong aspirations for the platform.  Their day jobs range from professionals with experience in healthcare, academia, the pharmaceutical industry, journalism and students.  Among them are Ph.D. level scientists, a financial services manager, a pharmacist, a journalist, a podcast developer, software engineers and many more individuals bringing unique skill sets applicable to the team.

Longterm volunteer or new, each team member strives to make a positive impact.  Some are driven by family members affected by a rare disease.  Others seek to grow their professional skills to help build their careers.  All are motivated in a belief to make information accessible.  Says one volunteer, “Science provides the basis for major advancements in the treatment of patients.  However, this information does not always reach patients, or if it does, it is not easily understandable to them.  What motivates me is to help people in despair become aware that they have not been forgotten and that people are dedicated to research their conditions to find potential treatments."  

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!