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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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Thank you nurses!

Those of you who spend any time in hospitals know that while the relationship you have with the specialist is of critical importance.  The life of your child is often quite literally in their hands and you must have the utmost trust in their judgement and in your ability to community care effectively with that person. [...]

Looking Back

This is such a journey!   I just found this post on facebook from nine months ago.  It was from Ayrie’s last surgery in Chicago, just before we moved to Minneapolis.  It’s hard to believe all we’ve gone through in the last nine months both generally and health related.  I actually took a stress quiz [...]

Project Health: Meeting needs with simple ideas

Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me… getting real people to make small changes that significantly support people’s health related needs!

An undergraduate student at Harvard observed at hospitals and realized that often there was nothing the doctor [...]

SOLVE Fearlessly

SOLVE is a great set of steps listed by the Children’s R.A.R.E. Disease Network (click here) designed to help you organize you to help you take action on behalf of your child.  Some of the steps I did naturally, such as researching.   But it was our first surgeon who told me to keep a detailed [...]