The UK Rare Diseases Framework is due to be updated next year. The Parliamentary Office of Science and Technology is now preparing a briefing document for parliamentarians to be published in the spring.
The document will cover technological advances for treating rare and genetic conditions, but also issues around access and coordination of care.
Stakeholders are invited to contribute to the report, and submissions are being received until 3 October 2025. You can read more here and submit contributions through this form.