Rare Disease Support

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. [...]

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 [...]

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 [...]

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 [...]