Since May last year I have been working on this interesting project to co-design a Route Map for 2 specific genetic rare diseases: ALD – Adrenoleukodystrophy and AMN – Adrenomyeloneuropathy.
We are now prototyping the Route Map that will be tested soon with patients and NHS relevant professionals. But the first deliverable is now available.
If you think this is an interesting project and you would like to know more about the problems and needs of patients and families with these genetic rare diseases you can read my post and download the Report.
At this stage feedback and comments are very welcome!