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Shire's "Visiting Patient Series" focusing on DEB

Recognizing the importance of promoting education and disease awareness for Shire employees, the company's "Visiting Patients Series" programme recently included a visit from people living with EB.

In 2013, Shire took its first steps toward developing a potential protein replacement therapy for Dystrophic Epidermolysis Bullosa (DEB) with the acquisition of Lotus Tissue Repair and the investigational therapeutic candidate protein recombinant collagen VII (rC7).

DEB is a rare disease characterized by extremely fragile skin and recurrent blister formation, with no treatment currently available. It fits well into Shire's portfolio of rare diseases characterized by the high level of unmet medical need.

The DEB leadership team recognized the importance of promoting education and disease awareness for Shire employees across the business with the program in its early stages.

Shire demonstrated its ongoing commitment to the rare disease community with a Lunch & Learn session highlighting DEB on May 21, 2013. This was part of the third year of the Visiting Patient Series programming. The session featured Phil Vickers (SVP and Head of Global Research and Development), Mark de Souza (former founding CEO, Lotus Tissue Repair), and a mother and son personally impacted by RDEB.

This family shared their story of DEB, using equal parts of inspiration, heart-wrenching experience and humor, and gave the standing-room only audience of Shire staff a clear view of the far-reaching effects of DEB on their lives.

Shire employees at the Lexington, Massachusetts location attended the session in person and Shire recorded the presentation to allow viewing by other Shire employees located around the world or who could not get into the packed auditorium.

Through patient-led educational events like this one, Shire employees gain a true understanding of the impact of rare diseases and remain dedicated to the Shire purpose to enable people with life-altering conditions to lead better lives.

Shire has engaged with the EB community in several ways throughout 2013, including strategic meetings such as EB-CLINET conferences, attendance and presentations at national and international DEBRA conferences, and support of EB awareness events. Shire currently plans to continue the Visiting Patient Series in coming years, and hopes to incorporate another event with a focus on EB.

(contributed by Shire)

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