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26 Feb 2009
Shire HGT Announces Support for Rare Disease Day

Shire Human Genetic Therapies (Shire HGT), a business unit of Shire plc, announced today the company’s participation in the second annual Rare Disease Day, a public awareness campaign focusing on the challenges and hopes of individuals suffering from rare diseases. On February 28, 2009, political institutions and patient organisations will continue to highlight some of the approximately 7,000 rare diseases, most of which stem from genetic disorders. In the European Union alone, between 27 and 36 million people suffer from rare diseases that can result in the need for permanent medical treatment, reduction in life expectancy, and in some cases, life-threatening conditions.

To support the need for accessible public information, Shire HGT has released two informational videos highlighting hereditary angioedema (HAE) and Fabry disease, two rare diseases. The videos can be viewed at By telling patients’ personal stories, the videos provide insight into the difficulties associated with proper diagnosis along with the daily challenges of living with a disease.

“Rare Disease Day provides an excellent platform to raise public awareness, and Shire HGT is proud to be a part of these activities,” said Mark Rothera, Vice President & General Manager of Shire HGT Europe, Middle East & Africa. “The patient videos are one of Shire HGT’s initiatives to increase the public’s knowledge and understanding of the impact of rare diseases on patients and families. Seeing and hearing patients’ personal experiences evokes an appreciation that words alone can rarely convey.”

Mark Rothera added: “Many people with rare diseases lead very active lives, but more can and should be done to help them. Additional research, improved diagnosis, and better treatment can greatly improve the lives of those suffering from such diseases. In light of the recent EU Commission Communication on rare diseases and the anticipated Council Recommendation, we hope there will be increased political intervention in Europe supporting rare diseases and services for those affected by them.”

For further information please contact:
Jessica Cotrone, Corporate Communication +1 617 613 4640
Katia Finck, Shire HGT +44 (0) 7824 475169

Notes to editors

About HAE
Hereditary Angioedema (HAE) is a rare genetic disorder that is estimated to affect between 10,000 and 50,000 people in Europe. It is marked by recurrent episodes of skin swelling (oedema) in different parts of the body, as well as in the airways and internal organs. Oedema of the skin usually affects the hands, feet, face, or genitals. While skin oedema is not life-threatening, patients suffering from this type of oedema often withdraw from their social lives due to disfiguration, discomfort, and pain. Oedema of the throat, nose or tongue is particularly dangerous and potentially life-threatening.  

About Fabry Disease
Fabry disease is a lysosomal disorder (LSD) that interferes with the body’s ability to break down specific fatty substances which accumulate within the body due to a specific enzyme deficiency. Organs that are most affected are the kidneys, heart, and skin. Fabry disease affects an estimated 8,000 to 10,000 people worldwide, and those with the disease are at risk of renal, cardiac, or cerebrovascular morbidity and premature death.

Shire’s strategic goal is to become the leading specialty biopharmaceutical company that focuses on meeting the needs of the specialist physician. Shire focuses its business on attention deficit and hyperactivity disorder (ADHD), human genetic therapies (HGT) and gastrointestinal (GI) diseases as well as opportunities in other therapeutic areas to the extent they arise through acquisitions. Shire’s in-licensing, merger and acquisition efforts are focused on products in specialist markets with strong intellectual property protection and global rights. Shire believes that a carefully selected and balanced portfolio of products with strategically aligned and relatively small-scale sales forces will deliver strong results.

For further information on Shire, please visit the Company’s website:

26 Feb 2009 Shire HGT Announces Support for Rare Disease Day (22KB PDF)

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