nice & meds for rare diseases

[hamble99b]

just watching BBC Parliament channel, showing a discussion with N.I.C.E.

laura weir chair, patients involved in nice.

barbara keeley labour mp for worsley & eccles south.

they raised two importat points:-

lw - nice are taking over med's for rare diseases, the reps for people with rare diseases need to know dates for consultations.

bk - they are such a small number they feel they will not be heard.

it moved on to other issues.

sandra.

.

[Jann]

Ties in with Susan article from Twitter

[hamble99b Volunteer]

which one?

sandra.

[John_Mills Volunteer in reply to hamble99b]

The previous blog Sandra

[Derek]

The number of people identified with a rare disease seems to be growing rapidly as VUK and others identify sufferers with little knowledge of their illness. On that basis I would refute the comment by bk that we are just a small number, more like the tip of the iceberg.