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Featuring Works of Art by the Community Touched by Lysosomal Storage Disorders

Featuring Works of Art by the Community Touched by Lysosomal Storage Disorders. Expression of Hope II: Inspiration through Art An Introduction. Internal Use Only. Program Overview.

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Featuring Works of Art by the Community Touched by Lysosomal Storage Disorders

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  1. Featuring Works of Art by the Community Touched by Lysosomal Storage Disorders Expression of Hope II: Inspiration through Art An Introduction Internal Use Only

  2. Program Overview • Expression of Hope is a global program of good will and awareness featuring works of art by the community touched by lysosomal storage disorders. • Selected artwork will be displayed at various events around the world where others in the community can view it. • Submissions will also be posted on expressionofhope.com for accessibility to the broader community. • Artists will be commissioned from the Massachusetts College of Art and Design to create works which are their interpretations of individuals living with LSDs. • We envision that those who experience this art will be inspired and moved by the powerful expressions of the human spirit which the works will reveal.

  3. Program Goals • To generate awareness and understanding of the incredible strength and courage of the thousands of people worldwide living with LSDs • To foster a sense of community among these people and the healthcare providers who have dedicated themselves to helping them • To share more further creative expression and experiences from the lives of people living with LSDs

  4. Program Reach

  5. Advantages to Getting Involved • Advantages for Patient Organizations • Higher visibility for their organization/chapter • Increased awareness of the relevant disease state • The opportunity to have their logo posted on the Expression of Hope website • The opportunity to have a link to their own site from the Expression of Hope website (where regulatory permits) • Access to Expression of Hope note cards which can be ordered directly or which you can customize • Advantages for Patient Participants • An opportunity to express their inner feelings • Have their work posted on the Expression of Hope website • Receive the Expression of Hope book • Potentially have their work included in the traveling exhibit • Potentially travel to and be honored at a traveling exhibit

  6. Program Awareness • Patient Organization Channels • Announcement letter to advocacy groups • Postcard for advocacy groups to distribute, also use as leave-behind • Announcement for advocacy groups’ newsletters • Announcement w/ link for advocacy groups’ websites • Announcement for advocacy groups’ eNewsletters • HTML Email announcement w/link to EOH website • Genzyme Channels • Expressions of Hope website • Postings on patient support websites • Postcard to distribute, also use as leave-behind • Announcement in patient (e)Newsletters • Mailing to GTS database • PPT slide for use at Genzyme patient seminars

  7. EngagingPatient Organizations • Read the Discussion Guide • Send out the program announcement letter to the patient organization(s) you collaborate with • Discuss Expression of Hope (preferably in person) with patient organizations using this Discussion Guide • Send the information collected from the section: Obtaining Support, page 2 of the Discussion Guide to Paola Silva at Paola.silva@genzyme.com(617-768-6013) • Collaborate with patient organizations to get the word out. Follow through with them to be sure they have the information or resources they need to inform their community and support the program. Be pro-active!

  8. HTML E-mails • 4 Expression of Hope HTML E-mails will be sent . • Use the “forward to a friend” function to send each e-mail to patient organization representatives, healthcare provides & other key stakeholders • Alternatively, send a list of e-mails address of stakeholders to expressionofhope@genzyme.com & the e-mails will be sent to them directly Use the “Forward to a Friend” function to forward

  9. Program Components • Core program components created • Artwork files available for local customization and translation • Freedom to use images of the artwork to suit local needs

  10. Featuredartwork will be used to create various print collateral material, including: Expression of Hope book postcards and promotional materials calendar

  11. Country Implementation Genzyme locations around the world have continued the momentum of the program by using Expression of Hope branded materials to customize their own local awareness campaigns, including: calendar country-specificnotecard sets

  12. 2008-2009 Program Timeline • December – Internal Kick Off • February 2nd – Website live & call for submissions • May 29th – Submissions closed • September – Art posted on website/ materials created

  13. Expression of Hope Team • Annamarie Dillon, European Coordinator • Marie Muniz, MPS I Representative • Jamie Manganello, Patient Advocacy, Program Lead • Jennifer Wound, Pompe Representative • Jim Phillips/Liza Maloney- Design/Production Support • Kathleen Coolidge- US Coordinator • Laura Weinstein, Gaucher Representative • Linda Carroll-King, Meetings Management • Lori Gorski, Corporate Communications • Lynda Phillips-GTS Coordinator • Masako Nakamura/Lee Kaukus- Japan/APAC Coordinators • Meredith Fitzgerald- US Coordinator • Paola Silva, Team Coordinator • Renata Senna, Americas Coordinator • Stephanie Chin, Fabry Representative, Mass Art Lead • Stephen Martin, e-business • Susan Foley, e-business

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