RareSpace is a collaborative project to share and advance knowledge about rare diseases among medical professionals, researchers, patients, parents, advocates and the general public Learn more.
Blog
Join our blog, hear from other parents and rare disease experts. We encourage your involvement and comments.
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Family Stories
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Parent Advocacy Program
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Resources
Providing you with a variety of tool kits, programs and links, helping you find relevant information more quickly. Click here >>
Rare Disease Search Database
Helping you find disease specific information faster. Search by disease, orphan drug and symptom.
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Interviews with parent advocates and rare disease leaders. Click here >>
FEATURED VIDEOCAST:
Parent Perspectives:
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Latest News From The Children's Rare Disease Network
September 1, 2010
Rasmussen’s Encephalitis Research Conference
The Global Genes Project Aims to Battle Rare Disease Through the ‘Vote4Hope’ Campaign and Pepsi Refresh Competition
August 31, 2010
MarbleRoad Launch and Fundraising Event to Support Families Affected by Complex Illnesses
August 27, 2010
European Commission appoints new members of the Committee of Experts on Rare Diseases
