We are a pro-bono non-profit that is leading the fight against Dystonia. Dystonia is the disorder version of Parkinson's and continues to go undiagnosed and misdiagnosed. I am the spokesperson for the disorder -- I have appeared on Oprah, The Today, spoke at TED, etc, etc...
Our current site is www.lifewithdystonia.com.
A new site will be launched shortly. We are not a rare disorder, even though we are categorized as such.
I had to go from doctor to doctor to get one to agree with me -- I was able to self-diagnose, yet specialists had no idea what it was. I taught myself to walk again last year.
If you want more info, we can send you press at firstname.lastname@example.org
We are the only pro-bono group out there.
Ms. Rogers Hartmann