" />

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

Humor

Kid With Cancer Hopes To Realize Dream Of Meeting Competent Oncologist

One definition of satire is to ridicule a situation or event in order to expose or correct it, making good satire both painful and funny (think The Office).  This article in the satirical paper ‘The Onion‘ was right in in that it is both funny and painful.  I often feel like it’s my fourth job (after my real job, my coursework and parenting) to fight for the best care.  Whether its appealing the insurance company, gathering letters of support, reapplying to Medicaid or soliciting funding to cover travel expenses, it is MUCH easier to get mediocre care than excellent care.  And all too often the fight is to great and people have to settle for good, not great.  I think this article does a good job of making that point.

If air travel worked like health care.

More satire!  I have written a lot about how much time it takes to manage health care… the appointments, insurance, travel arrangements, sending documents around, finding specialists, getting specialists to talk to each other and on and on.  This video does a brilliant job of making that point by showing what air travel would be like if it was managed like health care.

Share and Enjoy:
  • Print
  • Digg
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • email
  • LinkedIn
  • MySpace
  • PDF
  • Reddit
  • StumbleUpon
  • Technorati
  • Twitter
  • Yahoo! Buzz