" />

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

Health care

I think a lot about health care quality, what it is, how you know it when you see it and how you measure it.  I am in part inclined to think like this because my background is in educational research.  But I have also been quite inspired by the writing of Atul Awande and loved Complications, Better, and Checklist Manifesto.

So what do we mean when we talk about the quality of health care?

There are as many definitions for health care quality as there are people and organizations trying to define it.  Healthcare “quality” can encompass many things but often refer to three areas: availability of care, the patient’s experience when receiving the care and, the outcome of the care received.   For example,  the Institute of Medicine defines quality as “The degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.”

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