HU have informed me that they are applying to have the opportunity to develop a new tool ("ExperienceUnlocked") to help improve patient services in the UK by using patient feedback better.
The description of the tool is at pfchallenge.clearvale.com/p...
You may be interested in reading about it.
If you then register at pfchallenge.clearvale.com/a... and then sign-in, you can vote on the ExperienceUnlocked project by clicking on the LIKE. button.
It may help HU get selected to go ahead with their project.
As you will know, I am a great believer in accelerating therapeutic progress by widening the information about AMN, gathering better information and statistics and so-on, so I think this is a good way forward.
All the best
Chris
Upregulating ABCD2, ameliorating symptoms, keeping busy 
Newly diagnosed AMN woman w/AMN son looking for diet/oil advice and experiences. 
REDUCING VLCFA COULD REDUCE SPASMS AND OTHER SYMPTOMS OF AMN.
