Hereditary Spastic Paraplegia (HSP) – Northern Ireland Rare Disease Partnership

Hereditary Spastic Paraplegia (HSP)

Hereditary Spastic Paraplegia (HSP), sometimes called Hereditary Spastic Paraparesis, is a rare neurodegenerative condition that primarily affects the lower limbs. It is characterised by progressive stiffness (spasticity) and weakness (paraparesis) in the legs. Some variants of HSP may also involve cognitive changes, visual or auditory symptoms, and other neurological effects.

HSP has many genetic subtypes, and while some people may experience mild symptoms well into adulthood, others may face complex challenges from an earlier age.

Support and Community

Hereditary Spastic Paraplegia Society is a UK-registered support group charity, open to all individuals and families affected by HSP. While we primarily cover the UK, we also welcome a small number of members from the Republic of Ireland.

We provide:

Regular Zoom meetings for members across the UK and Ireland.
Occasional in-person gatherings, organised either centrally or by local members.
Information leaflets and awareness resources.
Representation through partnerships with Genetic Alliance and Neurological Alliance, giving us access to NHS and government stakeholders.

Estimated Numbers in the UK and Ireland

Based on an estimated incidence of 3 per 100,000, we expect:

Northern Ireland: ~50 people
Republic of Ireland: ~100 people
England: ~1,800 people
Scotland: ~180 people
Wales: ~90 people

Clinical Support

Specialist knowledge of HSP among neurologists is limited, in part due to a national shortfall of around 30% in clinical neurology staffing. However, we are aware of two centres with expertise in HSP:

Sheffield Teaching Hospitals
The National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, London

Research and Europe-wide Collaboration

We are proud to be associated with EuroHSP, which is actively working toward potential treatments for HSP.

Due to the structure of healthcare access across Europe, treatments approved through EuroHSP may initially be available only in the 26 EU member states. In the UK, access will depend on separate national approval processes. We continue to advocate for timely evaluation and adoption through our alliances.