UK Rare Diseases Framework Questionnaire

09 November 2021

The Department of Health and Social Care (DHSC) has launched a questionnaire on the draft actions that have been developed for the implementation of the UK Rare Disease Framework in England, ahead of the publication of the England Action Plan, due to coincide with Rare Disease Day in February.

There are 23 actions in total, covering the four priorities:

  • Helping patients get a final diagnosis faster
     
  • Increasing awareness of rare diseases among healthcare professionals
     
  • Better coordination of care
     
  • Improving access to specialist care, treatment and drugs

For each action, DHSC has set out the lead organisation that would be responsible for delivery, plans for patient involvement, milestones and impact measures. The questionnaire seeks feedback on whether the proposed actions will contribute towards implementing the Framework and whether it is sufficiently ambitious. There is also a question about whether the actions taken together will address the priorities.

DHSC is inviting responses from across the rare disease community, including:

  • people living with a rare disease
  • patient or public voice representatives
  • carers
  • family members
  • clinicians
  • industry professionals
  • healthcare professionals
  • researchers.

The questionnaire closes at 5pm on 26th November.

Take the questionnaire