http://rarediseasesupport.org Building community and providing support for children, families and friends impacted by rare pediatric diseases Mon, 21 Jun 2010 12:09:16 +0000 en hourly 1 http://rarediseasesupport.org/2010/01/25/welcome/ http://rarediseasesupport.org/2010/01/25/welcome/#comments Mon, 25 Jan 2010 19:29:08 +0000 Nora Murphy http://rarediseasesupport.org/?p=4 Welcome to our site.  This is a place for the people who love a child with a rare disease,disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends.  I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for [...]]]> Welcome to our site.  This is a place for the people who love a child with a rare disease,disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends.  I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for our family and loved ones.  We have felt fear and triumph, desperation and hope.  I have never felt more supported, or more isolated.  I hope to use this website as a place to share information, support and stories.   This website and community will grow through your contributions.  So please, consider sharing information or a story or building a profile.  Thank you.                         xo, nora

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