A national adult centre for people with a rare genetic condition is to be established at Queen Elizabeth Hospital Birmingham following Government approval.

University Hospitals Birmingham NHS Foundation Trust (UHB), which runs QEHB, was asked by the National Commissioning Group (NCG) to become the national centre for Alström Syndrome.

Alström is a rare genetic condition which affects sight, hearing and internal organs, with only a handful of patients diagnosed each year.

The move will involve existing adult services being transferred from South Devon Healthcare NHS Foundation Trust to Birmingham.

To commemorate the event, a sponsored cycle ride will take place from Torbay Hospital to QEHB between 22 and 25 June.

The event is aimed at raising money for the Alström Syndrome UK adult group to help pay for activity breaks, family support and equipment.

Representatives from both Torbay and QEHB are due to take part, as well as patients on tandems.

The Alström service was established in its current format in 2006 after Torbay Hospital and Birmingham Children’s Hospital were designated for adult and children services respectively.

The retirement of the lead clinician for Alström at Torbay has enabled the service to be relocated to Birmingham, offering patients the chance to benefit from both the facilities and expertise available at QEHB as well as the central location of the city.

Dr Tarekegn Hiwot, lead clinician in inherited metabolic disorders at UHB, said they had been working closely with the Alström UK Patients' Society and NCG for the last two years in order to transfer the care of patients with the condition to Birmingham.

Establishment of a national adult centre for Alström is seen as a natural extension of the adult IMD service at UHB. The move would also form part of the Trust’s aims to become a national centre for rare disease.

In addition, it would provide continuity of care for patients with a natural transition from Birmingham Children’s Hospital.

There are currently 28 adult Alstrom patients in the UK known to Torbay Hospital. It is also estimated that up to 10 young adults will move from Birmingham Children’s to QEHB in the next three years.

A further 15 potential Alström patients could also exist in the UK who are unknown to the service, while an estimated three or four new cases will be diagnosed each year, with half of them expected to be adults.