SMA UK alongside a diverse coalition of organizations and clinical leaders, are advocating for the appointment of a National Clinical Director (NCD) for Rare Diseases.
While each rare condition may be unique, collectively they impact 1 in 17 individuals in the UK. This means that approximately 3.5 million people living with rare diseases face considerable challenges, including:
- Lengthy journeys to diagnosis
- Complex care needs
- Limited treatment options
All too familiar for those affected by SMA.
The establishment of an NCD for Rare Diseases would offer essential national clinical leadership to help:
- Provide strategic direction as we navigate the UK Rare Diseases Framework beyond its expiration in 2027.
- Ensure that the patient voice is championed and that services are co-designed in collaboration with the community.
- Create connections in the rare disease landscape to advance national programs, involving Government, NHS, NICE, NIHR, and the life sciences sector.
- Transform the 10-Year Health Plan reform agenda into tangible improvements for rare diseases and sustainable specialized services.
In various clinical fields, NCDs have proven to be instrumental in advancing quality improvement initiatives and shaping commissioning policy.
With the UK Rare Diseases Framework continuing until 2027, the introduction of a dedicated NCD role would reinforce a collective commitment to addressing the significant unmet needs and health disparities faced by those living with rare conditions.
We look forward to collaborating with the NHS, Government and partners to bring this vital role into existence.
Read the joint Letter National Clinical Director for Rare Diseases February 2026 here.
