Community Pages 2017

I last posted a list of on-line community pages in 2011, and there have been a few more appearing since then (either because they are new or because I didn't find them last time!). This list focuses on pages where you can find others with HSP and meet/chat/ask questions (etc.).  I would welcome comments with links to any other community pages.

Facebook:

The UK group: https://www.facebook.com/groups/19469684343/
The Australia group: http://www.facebook.com/pages/HSP-Research-Foundation/137857172915152
The USA group: https://www.facebook.com/groups/12339208066/
Euro HSP: https://www.facebook.com/groups/eurohsp/
The Spanish group: https://www.facebook.com/groups/49797425583/
The Italian group: https://www.facebook.com/groups/317582312142/
Swedish: https://www.facebook.com/groups/238578376197139/
Portuguese: https://www.facebook.com/Paraparésia-Espástica-Familiar-Ramo-Doenças-Raras-124536010894360/
French: https://www.facebook.com/paraplegiespastique/
Danish: https://www.facebook.com/scahsp/
Greek: https://www.facebook.com/hereditaryspasticparaplegia.gr/
Another English: https://www.facebook.com/groups/125580470865793/
Another English: https://www.facebook.com/groups/56874131931/
Another English: https://www.facebook.com/groups/HSP.info/
Another English: http://www.facebook.com/pages/Hereditary-Spastic-Paraplegia-HSP/121279057942990

Medical/patient community pages:

Rare Connect: https://www.rareconnect.org/en/community/hereditary-spastic-paraplegia
Patients Like Me: http://www.patientslikeme.com/conditions/493-hereditary-spastic-paraplegia

Information: 

There are plenty of places to get information about HSP. Here are a few interesting places:

• This Facebook group https://www.facebook.com/groups/1480906428886694/ reports all sort of interesting things.
• The Spatax network: https://www.facebook.com/SPATAX-186083254777101/
• Tom Wahlig (in German) https://www.facebook.com/Tom-Wahlig-Stiftung-110782708979263/  
• This community for researchers (& crowd funding) http://react-community.org/diseases/606 its a bit empty at the moment, but you could sign up and help raise awareness!

I began this post by copying the previous set of links and checking them all. I deleted those that either don't exist any more, or haven't been updated for a good few years.

I have added various pages that I've found in recent years. Its interesting to note that there don't appear to be any groups/pages from Asia, Africa or South America (perhaps except the Portuguese page). Perhaps there is a cultural difference, or its a language barrier.