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Welcome to our site

This site 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

Aspiration

We aspire to provide support for people impacted by rare pediatric diseases by sharing stories, providing information, and building community.

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If you have found this site to be helpful, please consider making a donation. Every dollar supports my work on this website or is applied directly to medical expenses.

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A New Sense of Normal

This post is written by my sister Emily (the beautiful bride below).  This post shows not only how amazing and special she and her husband are, but also how much a rare disease can impact the extended family.  This narrative was originally posted on  http://potteryblog.com

xo  nora

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This post is a very personal one. It’s [...]

Our First Donation!!

Thank you, thank you, Nadine for being our first contributing supporter.  Your generosity is greatly appreciated.

Nora, Ayrie & Shiya