Friday, 23 October 2015

HSP maps

I have found 2 online maps showing the locations of people around the world with HSP. One of these I had found recently, the other I've known about for some time.

The database shows people with HSP, PLS and ALS. This is based in the USA, and (according to the website) was originally set up by Frank Reyerse who was diagnosed with PLS in the early 1990's and aims to connect people with HPS PLS and ALS together worldwide. The map is branded with the logo, and the database now seems to be owned by them. Most of the people on the map are in North America and Europe, but there is also a reasonable number in Australia and New Zealand. I dont seem to be able to find the number of people shown. I have recently and previously tried to get added, but that didn't seem to get through. I've asked why.

The site has been put together by a group of chronic disease sufferers. The map covers a large (over 100) range of rare diseases,  including HSP. There are nearly 90 people with HSP shown, mostly in North America, South America and Europe. You can find these also on Facebook and Twitter I was able to add my details and was visible on the map immediately.

It's clear to me that neither maps are truly worldwide because they have very few people in Asia and Africa, but perhaps this says more about either Internet access and the indexing of search engines or the activity of patient support groups in these parts of the world than it does about the prevalence of HSP.

One final map, on the UK HSP group website you can see a map with the locations of its members, but this is an image rather than an interactive map (link here:

If anyone has spotted any other maps, I'd love to know about them.

1 comment:

  1. In the last few days maps have also been enabled on the RareConnect website, showing the locations of members:

    Note - if you are a member, to appear on this map you may need to update your location so that it has enough info to know where you are. I was previously "UK", which didn't show, but now am as "Bristol, UK".