In the US there are lots of organizations trying to get the word out, like:

RSDS.org
RSDHope.org
forgrace.org (Cynthia Toussaint)

At least RSD is taken seriously!!!

In Belgium, Europe, where I live, there's not even one organization that's really specialized in raising RSD awareness. Not one. Not anymore. There used to be a support group for RSD patients, but they did absolutely zilch about awareness. They had meetings and lectures, yes, for the patients who joined, but that was all. No press releases, no really serious efforts to get the word out, nothing. The founder had RSD, and didn't get the help she needed, so it caved after a while. I'm sure she did all she could, but it just wasn't enough.

I have joined a chronic pain group (for all kinds of conditions involving pain) and they are doing the best they can to include RSD, but I still think we need a strong group, a lobby group almost, to try and raise awareness.

I have a website up, and I have written to a bunch of politicians, even the prime minister with NO results. Absolutely no results. From most, I didn't even get a reply! In this day and age! I even happen to know there's a prominent politician out there in my country whose wife has RSD. She sure has done nothing to help out her fellow RSD patients. And fellow politicians sure aren't queueing up to help!

The most prominent university hospital in my country has departments with doctors who still don't "believe" in RSD. As far as I'm concerned, RSD patients in my country are in serious trouble if nothing changes fast.

I kind of look up to the situation in the US, at least there are articles being published in newspapers, articles that take RSD seriously.

I have no clue what's holding RSD awareness back where I live... but it sure isn't a normal situation. I mean with all that's going on and the lack of attention... I haven't come across one RSD article in the news here.

Can you imagine all the RSD patients going to have a check-up for SSD? There's no generalized protocol even there. You depend on the knowledge the doctor you happen to end up with has about the condition. Most are not knowledgeable!!! It's random and unfair. What if they did the same to MS patients? You'd soon hear about it!

I get so angry even thinking about this!