Tuesday, 22 December 2015

Rare Disease Day - the HSP push, Survey reminder

Next year rare disease day falls on the 29th Feb instead of the 28th, its a leap year.

There's a big push to get HSP more publicised on this date with the launch of the Potato Pants HSP brand, and the tagline Taking steps towards a cure. You may be able to spot various things popping up on the HSP groups. Get in touch with your group and find out if you can help.

Not sure where potato pants came from? - Lori Renna Linton came up with the idea in an off-the-cuff remark about what its like living with HSP. She is trying to get on the The Ellen DeGeneres Show in the USA. You can help promote this too: https://www.facebook.com/photo.php?fbid=10153817389592430&set=a.62409792429.69399.749652429&type=3&theater

Talking of Rare Disease Day, there is still time for people to enter my survey. I'd welcome people to spend a few minutes telling me about the modifications that they have made around the home to help them to live with HSP. I'm going to be doing the analysis in the new year, ready for my own rare disease day event. I've nearly got 80 responses now, and it would be really good to break the 100 barrier if possible. You can find the survey here: http://www.surveygizmo.com/s3/2310166/d1b822668a8e

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