Hello All,
NORD has a new (sort-of new) blog site. A lot of the blogs are related to advocacy, government policy that affects rare diseases, insurance issues -- somewhat "dry" but very important topics.
We recently decided to invite "guest" bloggers (i.e. not NORD staff or anyone in an official type of position). We know that it's the human interest story that people really want to read!
Here is a link to the blog of our first patient "guest" blog --
http://blog.rarediseases.org/stiff-person-syndrome-a-fight-to-the-finish-line/. It's written by an absolutely amazing and courageous woman. Please do read it, and if you'd like to, please leave a comment of support on the page. You can just leave a first name and an email address (if you have a poiscenter.com email address, feel free to use that!).
One of your POIS forum members has graciously stepped up to the plate, and has submitted his blog about life with POIS, the roadblocks, the difficulties, etc. I received his draft copy (we always have to edit every blog submission so that it fits NORD"s writing style), and I am hoping that we can post your comrades's blog in a few weeks (we are purposely spacing these "guest" blogs out a bit).
He did a fantastic job, just FY!Who is he?
You'll just have to wait and see.
Stef
