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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. [...]

Have you checked out google health yet?

If you haven’t you should!  You can track your health information on-line and get links to health information that has some credibility.  Unfortunately my health provider has not partnered with Google so I can’t seamlessly integrate with Google.  I have to scan and upload documents.  But it allows me to keep all of our records in [...]

power, culture and health care quality

I am white and educated.  I have certain privilege that come along with these attributes.   But I also made below the poverty line last year, my children are on Medicaid and I’m a single mom.  These are attribute that put me squarely in the “have- not” category in the  world of privilege and power transactions.   I think about this a lot in [...]

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 [...]

Communication matters

I recently did an informal survey about health care quality for one of my classes and found that good communication between patients and doctors, between specialists and between medical personnel at different levels were rated as the most important characteristics of high quality health care by my classmates.

In my experience I know that I have [...]

Waiting to see a specialist

I can’t imagine having to wait months to see a specialist.  I remember in January of 2008 when my son was diagnosed with a rare pediatric disease, Juvenile-onset Recurrent Respiratory Papillomatosis(JORRP), a condition in which benign tumors grow in the larynx with the danger of growing to the point of airway obstruction.  I walked out of [...]