I am very new to this sort of thing, although I am not to mumsnet. I wondered whether mumsnet could create a section within its site for groups providing help and support for the families of children with incurable illness? The families with the diagnosis would enter the name of the disease - in this case Batten disease - and be taken straight to the Batten Disease Family Association website and the information available.
I also wondered whether mumsnet could have a scrolling part on the website for such charities / groups to go on to - may be one month at a time - to raise awareness rather than money. Charities would email in against published criteria to request inclusion. Clearly that would need a lot more thought - as I say, I just starting out with this.