Today, we've received an update from the Cross-Agency topic prioritisation group regarding the development of a NICE guideline on Huntington's disease.
We have been informed the guideline won't be given priority at this time. This is clearly disappointing but we are focusing on the positive steps we can take moving forward. Though we may be disheartened by this news, it serves as a reminder of how important our work is.
We'll continue to advocate for the community and have scheduled meetings with NHS England and the Minister. We won't give up! We're determined to keep pushing for change to support those affected by Huntington's disease.
Cath Stanley - Chief Executive. Huntington's Disease Association said:
"We are really disappointed at NICE's decision not to prioritise specific guidelines for Huntington's disease at this time. We disagree with the argument that elements of Huntington's disease care, covered in other guidelines are sufficient. We will not give up! We have meetings with representatives from NHS England, and the minister Helen Whately in the coming weeks and will continue to fight for better care for those affected by Huntington's disease"