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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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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 [...]

Rare Disease Day(s)

A repost from Science Blog.  I thought this was a nice summary of why rare disease day exists, and why ‘rare’ adds a dimension of complexity to disease identification, treatment and management.

This Sunday (28th February 2010) is ‘Rare Disease Day’, an annual event aimed at raising awareness of a multitude of rare diseases across the [...]

Narrative Medicine

My friend, Julie Wight, just introduced me to the idea of narrative medicine.  I am reading my first article and I think I might be hooked!  Part of what interests me is the idea that mind and body are not separate.  I know about my mind, my emotions, my fears… and there are some things I know [...]

Blog for Rare Disease Day, February 28th

Here’s your opportunity to write a post for Rare Disease Support and be a part of something bigger!  It’s pretty simple.  You send me a blog post (anywhere from 10 to 10,000 words about anything related to rare diseases, from the perspectives of moms, dads, kids, family, friends, doctors, pharmacists, etc), and I will post your [...]

What is a disease?

It sounds like a simple question. Right?  But it’s not when you delve into the question a little further and try to distinguish the difference between a disease, disorder, illness and medical condition.  What adds to the complexity is that different groups of people (mental health practitioners versus geneticists, for example) may use the same terms in different [...]

SOLVE Fearlessly

SOLVE is a great set of steps listed by the Children’s R.A.R.E. Disease Network (click here) designed to help you organize you to help you take action on behalf of your child.  Some of the steps I did naturally, such as researching.   But it was our first surgeon who told me to keep a detailed [...]