Genzyme and NHS National Commissioning Group form a £7 million Partnership to support world class commissioning for rare diseases

Date: November 5, 2007

As a result of successful negotiations between DH and the biotechnology company, Genzyme, the NHS National Commissioning Group today announced that they will join together in a £7m partnership to support a specialised system of care for patients with Lysosomal Storage Disorders (LSDs).

LSDs are rare, progressive, and often severe metabolic diseases that require specialised multidisciplinary expertise. The National Commissioning Group (NCG) has designated seven hospitals in England for the care of these patients: Royal Free Hospital, Great Ormond Street Hospital, The National Hospital for Neurology and Neurosurgery in London, Addenbrooke’s Hospital in Cambridge, Birmingham Children’s Hospital, Royal Manchester Children’s Hospital and Hope Hospital in Salford. The Partnership will support the ongoing development of these centres to meet the needs of patients with LSDs such as Gaucher disease, Fabry disease, Pompe disease, and the MPS group of disorders.

Announcing the Partnership, Dawn Primarolo, Minister of State for Public Health said: “We are delighted that we have been able to join in this Partnership with Genzyme for patients with lysosomal storage disorders and that we can jointly support patients living with these debilitating diseases. This Partnership will aid in sustaining our ‘world class’ commissioning of services for rare diseases through the NCG.”

Professor Tim Cox, Professor of Medicine in the University of Cambridge, who was one of the first European physicians to treat patients with these diseases at Addenbrooke’s Hospital, warmly welcomed the partnership. He said: “These are not simply orphan diseases; they are equally marked by the pain and alienation associated with every longstanding medical condition. Without partnerships like this one, such rare diseases would remain marginalised in medical textbooks and patients suffering from them, forever neglected.

Paul Drohan, General Manager of Genzyme UK and Ireland said: “Genzyme believes that the NHS has developed a highly effective model of care for patients with lysosomal storage disorders (LSDs) and that this is one of the best examples in the world of a universal healthcare system managing rare diseases. As enzyme replacement therapies are a key element of successful treatment of patients with LSDs, Genzyme is excited to have an opportunity to work closely with the NHS to support this service now and into the future.”

LSDs are categorised as orphan diseases since they are rare: they affect a small number of individuals, approximately less than 1 in 2000 population. In consequence they have had few options developed to treat them in the past. They are also difficult to recognise and diagnose.

To ensure equitable access the NHS in England has, since 2005, developed this ‘world class’ NCG commissioning structure, a commissioning model that is attracting interest internationally. Through this commissioning structure, the NHS has been able to meet the needs of patients with LSDs in England. Genzyme recognises the success of the LSDs Service and is committed to providing support for this model now and in the coming years.

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