13th Annual
Life Science Strategic Patient Advocacy Engagement Conference
December 5-6, 2024 | Philadelphia, PA
13th Annual
Life Science Strategic Patient Advocacy Engagement Conference
December 5-6, 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.
Cem Mangir
Director, Patient Advocacy Relations
GENENTECH
Monica Dudley-Weldon
President, CEO & Founder
SYNGAP1 FOUNDATION
Katie Burns
Executive Vice President and Managing Director
SMITHSOLVE
Danielle Branch
Director, Patient Experience
FULCRUM THERAPEUTICS
Rommie Carnevale
Vice President
SMITHSOLVE
Brian Tomlinson
Director, Patient Advocacy
FOUNDATION MEDICINE
Jaimee Halpren
Head of US Patient Advocacy & Strategic Partnerships
NOVOCURE
Jennifer Helfer
Senior Director, Patient Advocacy & Engagement
VIRIDIAN THERAPEUTICS
Mary Kay Turner
Senior Vice President, Patient Advocacy and Government Affairs
BRAINSTORM CELL THERAPEUTICS
Jessica Bateman
Executive Director, Advocacy Relations
AURINIA PHARMACEUTICALS
Amy K. Fisher
Senior Director, Head Patient Advocacy
SPARK THERAPEUTICS
Nicole Wood
Director, Advocacy & Strategic Alliances
AURINIA PHARMACEUTICALS
Stephanie Kallay
Director, Patient Advocacy & Outreach
CRINETICS PHARMACEUTICALS
Linda K. Murakami
Head of Health Equity, Patient Engagement and Policy
AMGEN
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
Tammy Russo
Head of Advocacy Strategy
DISCOVERY
Tessa Field
Director, Patient Advocacy
SPARK THERAPEUTICS
Cybele Gouverneur
Associate Director, Patient Advocacy
BRIDGEBIO
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
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
Katie Burns, SMITHSOLVE
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
Friday, December 6, 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
Nicole Wood, AURINIA PHARMACEUTICALS
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
Rommie Carnevale, Vice President
SMITHSOLVE
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
