" />

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!

Mingle Login

Login to connect with Others on Rare Disease Support:


Directory

Powered by Small Mingle Icon Mingle

Mingle Users

Powered by Small Mingle Icon Mingle

he Missing Voice of Patients in Drug-Safety Reporting

The New England Journal of Medicine posted a fascinating article about drug side effects.    It revels that all of the side effects listed on drug information handouts are generated from clinician or doctor reports of patient side effects and does not take into account the actual patient experience.  It’s not surprising that this would [...]

New Propranalol Clinical Trail

There is a new clinical trial for propranalol, the drug that my son is taking for RPR.  It says invitation only but if you are interested, your hospital may be able to work with one of the trial sites near you.  If you want to try propranalol with your child, it’s worth asking about!

The details are listed [...]

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 [...]