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13th Annual

Life Science Strategic Patient Advocacy Engagement Conference

September 18-19, 2024 | Philadelphia, PA

13th Annual

Life Science Strategic Patient Advocacy Engagement Conference

September 18-19, 2024
Philadelphia, PA

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:

Cem Mangir   
Director, Patient Advocacy Relations
GENENTECH

Yvette Dinkins
Senior Manager, Patient Advocacy Relations           
GENENTECH

Brooke Rothman
Associate Director, Patient Advocacy Experience
SPARK THERAPEUTICS

Tammy Russo
Head of Advocacy Strategy
DISCOVERY

Danielle Branch
Director, Patient Experience
FULCRUM THERAPEUTICS

Jessica Bateman
Executive Director, Advocacy Relations
AURINIA PHARMACEUTICALS

Jaimee Halpren         
Patient Advocacy, North America     
NOVOCURE

Monica Dudley-Weldon
President, CEO & Founder
SYNGAP1 FOUNDATION

Jennifer Helfer
Senior Director, Patient Advocacy & Engagement
VIRIDIAN THERAPEUTICS

Mary Kay Turner        
Senior Vice President, Patient Advocacy and Government Affairs  
BRAINSTORM CELL THERAPEUTICS

Linda K. Murakami
Head of Health Equity, Patient Engagement and Policy
AMGEN

Brian Tomlinson        
Director, Patient Advocacy    
FOUNDATION MEDICINE

Amy K. Fisher
Senior Director, Head Patient Advocacy
SPARK THERAPEUTICS

Nicole Wood
Director, Advocacy & Strategic Alliances
AURINIA PHARMACEUTICALS

Margaret Alabi           
Director, Patient Advocacy, US & Global Dermatology         
REGENERON

Stephanie Kallay        
Director, Patient Advocacy & Outreach
CRINETICS PHARMACEUTICALS

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

 

Anastasia M Joseck
Associate Director, Patient Advocacy
JAZZ PHARMACEUTICALS

Abraham Gitterman
Senior Associate
ARNOLD PORTER

Terri L. Klein
President and CEO
NATIONAL MPS SOCIETY

Belen Gonzalez Sutil
Director, Patient Advocacy
ULTRAGENYX

Tessa Field
Director, Patient Advocacy
SPARK THERAPEUTICS

Cybele Gouverneur
Associate director, Patient Advocacy
BRIDGEBIO

Day One Agenda
Wednesda, September 18, 2024

8:00   REGISTRATION & WELCOME COFFEE

8:50   CHAIRPERSON’S OPENING REMARKS

9:00    BREAK OUT SESSIONS: 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
Danielle Branch, Director, Patient Experience
FULCRUM THERAPEUTICS
Cybele Gouverneur, Associate director, Patient Advocacy
BRIDGEBIO

9:45   PANEL DISCUSSION: 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
Tammy Russo, DISCOVERY
Yvette Dinkins, GENENTECH
Jaimee Halpren, NOVOCURE
Brian Tomlinson, FOUNDATION MEDICINE

10:30   COFFEE & VIRTUAL NETWORKING BREAK

11:00   PANEL DISCUSSION: 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
Cem Mangir, GENENTECH
Amy K. Fisher, SPARK THERAPEUTICS
Amanda Sowinski, AMICUS THERAPEUTICS

11:45   PATIENT ADVOCACY AND LEGISLATIVE ADVOCACY: INVESTIGATING THE RELATIONSHIP AND ROLE
Assessing the impact of the patient voice at the state and federal level
Keeping tabs on the legislative impact of policy on patients
Practical steps to connect with legislators to learn about issues
• Involving the patients from counseling to advisory board
Probing ways advocacy and government can collaborate
Mary Kay Turner, Senior Vice President, Patient Advocacy and Government Affairs  
BRAINSTORM CELL THERAPEUTICS

12:30   LUNCHEON FOR ALL SPEAKERS, SPONSORS & ATTENDEES

1:30  PANEL DISCUSSION: 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
Amy K. Fisher, SPARK THERAPEUTICS
Margaret Alabi, REGENERON

2:15  FIRESIDE CHAT: HEALTH LITERACY: THINKING THROUGH ADVOCACY’S ROLE IN PROVIDING MEANINGFUL EDUCATION
• Tailoring your message to your purpose and audience
     »
Language considerations
     »
Visual and auditory considerations
     »
Diverse social media platforms
• Practical ways to create content that resonates with the audience
Investigating the company and advocates’ role in providing education
Tessa Field, SPARK THERAPEUTICS
Jaimee Halpren, NOVOCURE

3:00   COFFEE & NETWORKING BREAK

3:30   THINKING THROUGH TRADITIONAL ADVOCACY: NEWER WAYS TO REACHING MARGINALIZED AND UNDERSERVED COMMUNITIES
Approaches to reaching marginalized communities
     »
Building trust
     »
Having conversations
     »
Finding gaps
     »
Bringing together stakeholders
Newer ways to connect advocacy with organizations
Bringing efficient communication to communities
Finding partners to help to amplify advocacy’s presence
Tactics to make an impact and improve health outcomes
Jessica Bateman, Executive Director, Advocacy Relations
AURINIA PHARMACEUTICALS

4:15   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
Cem Mangir, Director, Patient Advocacy Relations
GENENTECH

5:00   Closing Remarks & End of Day 1

Day Two Agenda
Thursday, September 19, 2024

8:00   REGISTRATION & WELCOME COFFEE

8:20   CHAIRPERSON’S OPENING REMARKS

8:30   PANEL DISCUSSION: 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
Anastasia M Joseck, Associate Director, Patient Advocacy
JAZZ PHARMACEUTICALS
Abraham Gitterman, Senior Associate
ARNOLD PORTER

9:15  PANEL DISCUSSION: 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
Margaret Alabi, REGENERON
Nicole Wood, AURINIA PHARMACEUTICALS
Brooke Rothman, SPARK THERAPEUTICS 

10:00   COFFEE & NETWORKING BREAK

10:30   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
Linda K. Murakami, Head of Health Equity, Patient Engagement and Policy
AMGEN

11:15 REVIEWING AND EMPLOYING NEXT-LEVEL DATA ANALYTICS: Real-World Strategies for Measuring Outcomes
• Reviewing data collections and employing new analysis
Examining how advocates measure data that works
Evaluating measurable outcomes and effectiveness
Challenges and obstacles related to measurable data
Monica Dudley-Weldon, President, CEO & Founder
SYNGAP1 FOUNDATION

12:00   LUNCHEON FOR ALL SPEAKERS, SPONSORS & ATTENDEES

1:00   PANEL DISCUSSIONS: BEST APPROACHES TO PROVIDING EDUCATION AMID PATIENT COSTS AND AFFORDABILITY
Assessing patient advocacy’s role in educational programs
Tactics for education relating to price and cost to patients
Ways to inform communities about medication affordability
Additional strategies for patient empowerment through education
Abraham Gitterman, Senior Associate
ARNOLD PORTER
Nicole Wood, Director, Advocacy & Strategic Alliances
AURINIA PHARMACEUTICALS

1:45   UNIQUE INSIGHTS IN WORKING WITH SPECIALTY DISEASES AND DIVERSE POPULATIONS
Examining how the patient advocate role is trending and evolving
     »
Drug development
• How the industry works with specialty diseases
     »
Common diseases
     »
Rare and ultra-rare diseases
     »
Inherited disorders
• How the industry works with diverse populations
     »
Infants and children
     »
Teenagers and young adults
     »
Adults and elderly adults
How the industry supports the transition of care from pediatric to adult
Terri L. Klein, President and CEO
NATIONAL MPS SOCIETY
Belen Gonzalez Sutil, Director, Patient Advocacy
ULTRAGENYX

2:30   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, Senior Director, Patient Advocacy & Engagement
VIRIDIAN THERAPEUTICS
Stephanie Kallay, Director, Patient Advocacy & Outreach
CRINETICS PHARMACEUTICALS
Cybele Gouverneur, Associate director, Patient Advocacy

BRIDGEBIO

3:15   Closing Remarks & END OF DAY 2

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