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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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Pitt Researchers Receive Patent for New Head and Neck Cancer Treatment

It seems that this article is saying that the new drug might treat JORRP and RRP.  What do you think?  Click here for the full article.

The new treatment is based on a form of genetic therapy called “antisense,” or AS, in which a synthesized strand of DNA or RNA targets the EGFR genes within a [...]

Tasmanian Devils’ cause of cancer discovered

Wired Magazine reports that scientists have discovered the true identity of a contagious form of cancer that is killing Tasmanian devils. The population has been devastated by this cancer and researchers were able to trace the source back twenty years to a single animal. It appears that the cancer cells are rouge cells [...]