Rare Diseases: Epping Forest

The Government remains committed to improving outcomes for people living with rare diseases, including Friedrich's Ataxia, through the UK Rare Diseases Framework and England Rare Diseases Action Plans.

The NHS Essex Integrated Care Board (ICB) supports residents with rare neurological conditions, including Friedreich’s ataxia, through locally commissioned core services such as primary care, local neurology, community rehabilitation, therapy services, wheelchair and equipment services, and the management of associated complications. For complex inherited ataxias, patients may require referral to specialist neurology, neurogenetics, or ataxia services. Some of these elements sit within NHS England’s specialised commissioning arrangements, rather than being commissioned solely by the ICB. The NHS Essex ICB works collaboratively with other ICBs in the East of England, NHS England specialised commissioning teams, and specialist providers, to support timely local access, joined-up care and appropriate referral for those elements requiring specialist or nationally commissioned expertise.

NHS England has revised the national service specification for specialised neurology following extensive consultation. The service specification was published on 13 August 2025 and includes guidance on both specialised and core neurology services. The specification includes an Annex which provides greater clarity for neurology sub-specialties, including the categories of both movement disorders and neurogenetics into which ataxias fall.