Shire report highlights impact of rare diseases

Shire has highlighted data from a new report demonstrating the health, psychosocial and economic impact of rare diseases on patient and medical communities.

According to more than 1,000 survey responses, it takes an average of more than five years for a patient with a rare disease to receive a proper diagnosis in the UK, extending to seven years among US patients.

Before being diagnosed correctly, people often need to visit up to eight physicians and receive two or three misdiagnoses, due to the fact that doctors lack the time, resources and information to properly evaluate and manage their condition.

As such, patients with rare diseases and their caregivers often suffer a heavy emotional toll, due to the uncertainty and lack of available information on their problem.

Dr Flemming Ornskov, chief executive designate at Shire, said: "Shire hopes that this report will help drive forward a collaborative effort with the patient and medical communities to address the unmet needs identified."

In February 2013, Shire supported the Rare Disease Day initiative, which was held to raise awareness of issues such as these on a global scale.