Monday, April 22, 2013


I am so excited to be a part of this wonderful organization.  I cannot wait to get started.  We are mothers, fathers, grandparents, guardians, doctors and patients looking to make a difference in the rare disease community.  We are a non disease specific not-for-profit organization that started in Rhode Island, is moving into Massachusetts and will soon be all over New England.

Check us out on facebook or at the Rhode Island Rare Disease Foundation website, which is under construction at the moment.

If you are interested in support groups, fundraising or if you have any questions please contact me at

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