SHCA and Genetic Alliance UK publish new report on calling for the renewal of the UK Rare Diseases Framework
Published December 19, 2024The Specialised Healthcare Alliance (SHCA) and Genetic Alliance UK have published a new report the UK Rare Diseases Framework, reflecting on progress made against the four Framework priorities across all four UK nations.
Following engagement with SHCA members, the report draws out examples of progress made and opportunities to go further in each nation.
Together, the SHCA and Genetic Alliance UK are calling for the UK Rare Diseases Framework to be refreshed, renewed and recharged after 2026.
You can read the full report here.
The SHCA and Genetic Alliance UK have welcomed all four nations’ approach to engagement in delivering on the Framework to date and looks forward to continuing to work with them in developing future rare disease action plans.