International Federation of Pharmaceutical Manufacturers & Associations

Rare diseases - Exploring synergies and common objectives between the patient community and industry

Emmanuel Chantelot, Head of International Government Relations and Public Affairs, Shire and Chair of IFPMA Rare Disease Working Group RDI Annual Meeting 25 May 2016, Edinburgh

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About IFPMA

International Federation of Pharmaceutical Manufacturers and Associations (IFPMA) represents research-based biopharmaceutical companies and national pharmaceutical industry associations across the world.

KEY AREAS OF WORK

Advocate policies and practices that encourage discovery of and access to medicines and vaccines

Facilitate collaboration, dialogue and understanding within the industry and with other key global players in the health community

Bring all stakeholders together to foster innovation, promote resilient regulatory systems, uphold ethical practices and advocate sustainable health policies to meet global health needs

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IFPMA Rare Diseases Working Group

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Recognizing the importance of addressing unmet need in rare disease around the world, IFPMA has recently established a Rare Disease Working Group.

Members of IFPMA RD WG Chair: E. Chantelot (Shire)

Vice Chair: K. Loth (Celgene)

Goals of IFPMA Rare Disease WG

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AWARENESS INCENTIVES

PARTNERSHIPS ACCESS

Raise awareness about rare diseases and

promote as a public health priority

Shape policy incentives and orphan drug

regulatory frameworks in selected markets

Build international networks with rare

disease stakeholder community

Ensure sustainable patient access to

diagnosis, treatment and care

IFPMA RD WG aims to support the rare disease community through focused activities in four critical areas.

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IFPMA Work Plan 2016 in Rare Diseases

AWARENESS

INCENTIVES

PARTNERSHIPS

ACCESS

Produce and disseminate an IFPMA Educational Brochure to raise awareness of rare diseases among key IFPMA stakeholders at global and country levels

Develop IFPMA Policy Principles in Rare Diseases aimed at improving patient access to therapies that treat rare diseases

Build awareness amongst key stakeholders (patients, clinicians, policy makers, national industry associations) of the new IFPMA Rare Disease initiative

Identify 5-7 priority countries for active engagement to enhance rare diseases as a public policy focus and/or promote orphan drug incentive frameworks