Today I've been working on plastering this survey link everywhere I can think of. It is very important that we get as many answers as soon as possible. While not perhaps the most scientific of surveys, one of our researchers needs this data for a grant she is trying to get to further our research.
It is not information we track in the patient registry.
Honestly, it is also information we could use to plan future HPS outreach efforts.
It doesn't matter if you live in a place with lots of other HPSers. Most of us don't have that luxury. We do need, however, to get a feeling for where our population is being treated.
The survey honestly takes about 30 seconds. If you are filling it out on behalf of your child with HPS, please fill out one survey for each child with HPS (as if you have two kids with HPS, they would count as two patients at your local hospital.)
Here is the link: https://www.surveymonkey.com/s/BW2R8Z6