Rare ENOUGH!

As I begin the process of researching yet another disease (pancreatic enzyme deficiency or PED) that I have just recently been diagnosed with. I find a few random thoughts are tumbling around in my brain.

First, you would think that at some point I would be diagnosed with some sort of health problem that is common and for which a well developed treatment protocol has been developed. Nope. PED is rare, yeah!

Second, that in 2014 (even if the disease you had was rare) it would be easy to research any medical condition. Unfortunately it turns out that in the medical field so much of the information one needs is hidden behind pay walls for private medical journals.

Third, it is surprising that there aren't more groups whose primary goal it is to support people with rare diseases. 

It is clear to me that there is a lot that needs to be done to advocate for those struggling with all sorts of health issues (from issues of access to problems with being misdiagnosed). The question is how can I best serve a rare disease community with such diverse needs and such differentiated diagnosis?

How can I change this corner of the world that I am now a part of.