Wednesday, 25 May 2016

What is happening?

This morning I did a radio interview with BBC Radio Nottingham, who wanted a bit of information about Dupuytren's after interviewing a patient. We are trying to raise awareness!
NICE still have not decided on collagenase use, almost 6 months now. I'd love to be a fly on the wall in their internal discussions. They are also reviewing radiotherapy use, but that is a different group so maybe the decision there will come before collagenase?
Our thunderclap is going slow. We need more people to go to the website , click on support and allow the app to access your friendslist. All it wants with that is to calculate how many people will be reached: IF we reach 100 supporters by mid-June the thunderclap app will post a message on every supporters Facebook or Twitter feed (but NOT on your friends, don't worry!). So it does not cost anything, all it does is make people aware there is a condition called Peyronie's that is not something to be ashamed off!
The website keeps needing more work, links not working or information that is out of date. If you notice anything please go to Contact us and report it to Anna or Gary. We are updating the Peyronie's information (well, Gemma is- thanks Gemma for all the hard work!), so any problem on those pages also please inform one of us.
Meanwhile people look after your body, be gentle with your hands and feet and keep in touch with us!

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