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
Contribute and Share, Stories Photos & Videos. Click here >>
Parent Advocacy Program
We need your help! Play an active role within the rare disease community Click here >>
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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:
Impact of rare disease on families Watch here >>
Latest News From The Children's Rare Disease Network
July 30, 2010
Malaria-free mosquitoes created
July 27, 2010
Pfizer’s Viagra Faces FDA Review for Use in Children With Lung Condition
NIH Takes On New Role in Fight Against Rare Diseases
Be the Change in MN
