13th Annual

Life Science Strategic Patient Advocacy Engagement Conference

December 5-6, 2024 | Virtual Event

Solidifying a Highly Prominent Position for Patient Advocacy to Strengthen Initiatives & Streamline Corporate Processes, while Strategizing for Improved Access Opportunities & Partnerships for Patient Success by Paving New Paths to Reach Underserved Communities.

Program Presenters:

Rachel Joseph
Advocate Adviser
FRIENDS OF CANCER RESEARCH
Division Director
(Former) AMERICAN SOCIETY OF CLINICAL ONCOLOGY (ASCO)

Cassandra Smith
Advocacy Relations Director, Health Equity
AMGEN

Jennifer Helfer
Senior Director, Patient Advocacy & Engagement
VIRIDIAN THERAPEUTICS

Mary Morlino
Patient Navigator
UNDIAGNOSED DISEASES NETWORK FOUNDATION (UDNF)

Seth D. Ginsberg
Co-Founder and President
GLOBAL HEALTHY LIVING FOUNDATION

Amanda Sowinski
Associate Director, Global Pompe Lead, Patient & Professional Advocacy
AMICUS THERAPEUTICS

Cybele Gouverneur
Associate Director, Patient Advocacy
BRIDGEBIO

Abraham Gitterman
Senior Corporate Counsel
PFIZER

Ruby NavaRamos
Senior Manager- Patient and Community Outreach
THE LEUKEMIA & LYMPHOMA SOCIETY

Katie Burns
Executive Vice President & Managing Director
SMITHSOLVE

A Special Thanks to Our Sponsors:

Day One Agenda
Thursday, December 5, 2024

All Times Central US

8:00 REGISTRATION & WELCOME COFFEE

8:50 CHAIRPERSON’S OPENING REMARKS

9:00 EXAMINING HOW ADVOCACY CAN SUPPORT AND STRENGTHEN OTHER FUNCTIONS AND VICE VERSA
• Exploring impairments and restraint challenges that keep patients from trials
• Considerations relating to advocacy’s support of functions
» Communications
» Medical affairs
» Professional societies
» Clinical development
» Clinical trial recruitment
• Evaluating how leadership can view advocacy’s value
• Techniques to attract additional buy-in from leadership
• Talking points on how other functions can support advocacy
Seth D. Ginsberg, GLOBAL HEALTHY LIVING FOUNDATION

9:45 UNLIMITED POTENTIAL: THE VALUE OF THE PATIENT ADVOCACY FUNCTION AND THE IMPACT OF RELATIONSHIP (IOR)
• How advocacy can facilitate improved patient outcomes in trials
• Showing success through phases of drug development
• Unlimited potential relating to
» Improving relationships within the industry
» Helping to avoid pitfalls
• Discussing failed initiatives and lessons learned
• Examining the sustained commitment to the community over time
Amanda Sowinski, AMICUS THERAPEUTICS

10:30 COFFEE & NETWORKING BREAK

11:00 TOUGH CONVERSATIONS: HOW INDUSTRY HANDLES CHALLENGES IN RELAYING BAD NEWS TO COMMUNITIES
• Discussing factors that impact tough conversations
» Finances
» Program slowdown
» Program stoppage
• Best practices for communication with communities
» Avoid over-commitment
» Set expectations
» Stress transparency
• Creative approaches to framing obstacles positively
Cybele Gouverneur, Associate Director, Patient Advocacy
BRIDGEBIO
Seth D. Ginsberg, Co-Founder and President
GLOBAL HEALTHY LIVING FOUNDATION

11:45 WORKING SMARTER: HOW TO ENSURE PATIENT ADVOCACY STAYS AT THE FOREFRONT AMID RESOURCE AND BUDGETARY CONSTRAINTS
• Identifying ways to work more proficiently amid restraints
• Assessing investment opportunities throughout the lifecycle
• Best practices relating to cross-functional collaborations
• Evaluating and responding to industry trends
Katie Burns, Executive Vice President & Managing Director
SMITHSOLVE

12:30 PROACTIVE APPROACHES FOR IMPROVING DIVERSITY, EQUITY, AND INCLUSION (DEI)
• Factors influencing the lack of diversity in trials
• Thinking beyond patient advocacy organizations
» Faith-based organizations
» Core community organizations
» DEI focused organizations
• Utilization of inclusive imagery and language
• Understanding past areas of mistrust and disconnect
• Schemes for improving diversity in patient representation
Cassandra Smith, Advocacy Relations Director, Health Equity
AMGEN

1:15 Closing Remarks & End of Day 1

Day Two Agenda
Friday, December 6, 2024

All Times Central US

8:00 REGISTRATION & WELCOME COFFEE

8:50 OPENING REMARKS

9:00 CUTTING-EDGE METHODS FOR ASSISTING PATIENTS TO OVERCOME ACCESS BARRIERS
Barriers to access are one of the most prevalent problems patient advocates encounter. These
hurdles can have a wide variety of causes and solutions depending on the patient’s background
and disease state. For a varied perspective on access solutions, panelists will convene to discuss
multi-faceted approaches to assisting patients overcome barriers to access.
• Access concerns to affordable insurance and medications
• Recognizing the need to provide better access to treatments
• Telemedicine, telehealth, and digital health considerations
• Techniques for driving access through engagement programs
Abraham Gitterman, Senior Corporate Counsel
PFIZER

9:45 PANEL DISCUSSION: A NEW GENERATION OF PATIENT ADVOCATES: CURRENT AND FUTURE TRENDS
• Examining how the patient advocate role is trending and evolving
» Drug development
» Clinical trial processes
» FDA and policy
• Methods for cultivating a new generation of patient advocates
» Growing the advocate’s role
» Training and mentorship
• Exploring how patient advocates can work together as competitors
Jennifer Helfer, VIRIDIAN THERAPEUTICS
Cybele Gouverneur, BRIDGEBIO
Rachel Joseph, (Former) AMERICAN SOCIETY OF CLINICAL ONCOLOGY (ASCO)

10:45 COFFEE & NETWORKING BREAK

11:15 REAL-WORLD METHODS TO MAXIMIZE PATIENT DIVERSITY AND INCLUSIVITY IN CLINICAL TRIALS
• Expanding communities through diverse populations
• Designing effective trials through an ‘equity lens’
• Factors influencing the lack of diversity in trials
• Schemes to leverage a diversity of patient insights
• Educational programs to bolster diverse engagement
• Steps to build rapport with marginalized communities
Rachel Joseph, Advocate Adviser
FRIENDS OF CANCER RESEARCH
Division Director
(Former) AMERICAN SOCIETY OF CLINICAL ONCOLOGY (ASCO)

12:00 PATIENT CENTRICITY: PRACTICAL STEPS TO BREAKING DOWN BARRIERS TO ENSURE THE PATIENT VOICE IS HEARD
• Understanding diverse methods to support patients
• Empowering the patient voice outside the medical community
• Cross-functional partnerships to break down barriers
• Instilling patient-centricity into the advocacy model
• Strategic ways to identify evolving populations
• Social determinants of health and its influences
Ruby NavaRamos, Senior Manager- Patient and Community Outreach
THE LEUKEMIA & LYMPHOMA SOCIETY

12:45 Closing Remarks & End of Day 2

Pricing & Registration

Previous Attendees Include:

Account Director, SIREN INTERACTIVE
Associate Director Advocacy Relations, BIOGEN IDEC
Associate Director Patient Advocacy, Multiple Sclerosis, GENZYME
Associate Director, Advocacy Relations, GENENTECH
Associate Director, Patient Advocacy, BIOMARIN PHARMACEUTICAL
Communications Manager, LUNDBECK
Deputy Director of Stakeholder Engagement, PCORI
Director Patient Advocacy, MILLENNIUM PHARMACEUTICALS
Director, Advocacy, CELGENE
Director, Alliance Development, SHIRE HGT
Director, Commercial Excellence, BAXTER
Executive Director, DYSTONIA MEDICAL RESEARCH FOUNDATION
Executive Director, LEUKEMIA & LYMPHOMA SOCIETY
Head of North America, Genetic Diseases, GENZYME
Patient Advocacy Relations, GENENTECH
Patient Advocate, LUPUS FOUNDATION OF AMERICA
Patient Engagement Liaison, US Neurology, PTCBIO
President, GLOBAL HEALTHY LIVING FOUNDATION
President, Health Care Improvement Foundation, CC ALLIANCE
President, MARK KRUEGER & ASSOCIATES, INC.
Senior Director Regulatory Affairs, GENZYME
Senior Director, Global Patient Advocacy, SANOFI GENZYME
Senior Director, Patient Advocacy, INTERCEPT PHARMACEUTICALS
Senior Manager, Grant Management Department, ABBVIE
Senior Manager, Patient Advocacy, HORIZON THERAPEUTICS
Senior Vice President, JPA
Senior Director, Global Patient Advocacy, BIOMARIN
Strategic advocacy relations & stakeholder engagement, MEI PHARMA
VP-Global Head Patient Experience, ASTRAZENECA
VP-Head of Global Patient Advocacy and Policy, ARGENX
VP, Global Patient Advocacy, GENZYME
VP, Patient Advocacy, CELGENE
VP and Head, Global Medical Advocacy, BRISTOL-MYERS SQUIBB
VP, Patient Advocacy & Policy, OVASCIENCE

….And Many Many More

Who should attend:
Patient advocacy executives from pharmaceutical and biotechnology organizations who will find the greatest value in attending this meeting are those involved in the execution of advocacy initiatives for a company, as well as responsible for developing and maintaining compliant relationships and sup- port to patient advocacy groups, patients, key opinion leaders and stakeholders throughout the lifecycle of a product.

Job titles for this meeting include VPs, Directors, and Managers of:
• Patient Advocacy Relations
• Patient Advocacy Operations
• Patient Education Liaison
• Patient Assistance Programs (PAPs)
• Patient Access Programs

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