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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.

Donate

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.

About Mingle

Sign up for Mingle below and join the Rare Disease Support community. You can create a profile, post comments, make friends, send private emails and more!

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Resources

This will be a growing repository for resources.  While websites don’t take the place of help from real people, they can be quite helpful in certain situations.

This repository will grow, and please send contributions.  The original categories are:

  • Book Ideas: These are books that I have read, or that are on my reading list.
  • Links: These are links to all types of resources, organized into categories listed at the top of the page.
  • Stories: People have the most amazing stories to tell.  I want to make this a place to collect the stories from individuals, allowing us to turn to the experiences of others for inspiration and connectedness.
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