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Building the Bridge Between Foundation and Industry

Building the Bridge Between Foundation and

Industry

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Meet Today’s Panelists:

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Daniel LevineLevine Media Group

Ann Marie BingoManager, Global Patient Advocacy

Horizon Pharma

Anne BrunsAssociate Executive Director and

Operations ManagerThe Atypical HUS Foundation

Moderator:

Panelists:

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Ann Marie Bingo Manager, Global Patient Advocacy

Horizon Pharma

About Horizon

• Founded in 2005

– Biopharmaceutical company with strong growth

• Corporate headquarters in Dublin, Ireland

• U.S. operations inLake Forest, Illinois

• 1000+ employees

• Eleven medicines treating rare diseases, arthritis and inflammation

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Focused Commitment to Our Community

Four Pillars

Therapeutic Areas STEM/Education Innovation Children’s Healthcare

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Industry & Foundations

• Approaching Industry

– Clear goals & plans

– Clear Ask

– Willingness to have open & honest discussions

• Keys to a good relationship

– Open & honest discussions

– Know when to get involved and when to step out

– Education

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Why is the relationship important?

• Patient Groups are the voice of the disease community

– They focus on meeting the community’s particular needs

• As an Industry, we need to listen and learn from these communities to be successful

• Clinical Trial development

• Drug Approval

• Continued relationship

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Our Approach: Participate, Listen, Learn

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Horizon Team at local walk

TZ the IDF Zebra at Horizon’s Lake Forest Office

Cystinosis Research Network Conference Activity

Providing Resources Based on Our Learnings

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Resources Created Together with the Community

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Long-Term Commitment

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RAREis Launched on Rare Disease Day 2017

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Awareness initiative unites the faces of the rare disease community

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Anne Bruns Associate Executive Director and

Operations ManagerThe Atypical HUS Foundation

What is Atypical HUS?aHUS is an extremely rare, life-threatening disease caused by chronic, uncontrolled activation of the complement system. The disease can cause systemic TMA, leading to stroke, heart attack, hypertension, kidney failure, encephalopathy, seizures, pancreatitis, liver necrosis, intestinal ischemia and death.

Our Community

Creating a Relationship

• Understand regulations for industry- ask!

• Set your own standards and stick to them

• Share your projects, your plans and your goals

• Think outside of the box on ways to work together

• Be open to ideas

• Frequent contact and follow up

• Be appreciative

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Questions and Answers

Thank You Panelists:

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Daniel LevineLevine Media Group

Ann Marie BingoManager, Global Patient Advocacy

Horizon Pharma

Anne BrunsAssociate Executive Director and

Operations ManagerThe Atypical HUS Foundation

Moderator:

Panelists:

Its not too late, you can still join us at the

RARE Patient Advocacy Summit and RARE Partnering and Investor Forum

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