Conference

Justin Hopkin, MD, Patient Advocate / Division Chief, Hospital Medicine / Chairman Emeritus, University of Rochester / National Niemann-Pick Disease Foundation

9:15AM - 9:40AM

Keynote Fireside Chat: Embedding Patient Advocacy into Corporate DNA - Pathways to Lasting Impact

Fireside Guest:

Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics

Moderated By:

Sabina Kineen, Patient Advocate, Lived-experience Expert

Showing Events in 1 Track from 09:40am to 10:20am

ASK THE PATIENTS

9:40AM - 10:20AM

Clinical Trial Feedback from the Experiences of Patients and Caregivers for Better Planning and Execution

Christine McLennan, Associate Director, Clinical Trials, BioNTech US

Oronica Fields, Patient, Advocate & Community Ambassador

Jon Nelson, Lived-Experience Expert in Mental Health & Chief Pulverize Officer, Pulverize The Stigma

Sharon Rivera-Sanchez, Patient Advocate, Founder and Chief Executive Director, Trials of Color & Saving Pennies 4 A Cure

Showing Events in 1 Track from 10:20am to 11:00am

Grand Opening Break and Networking

10:20AM - 11:00AM

Grand Opening of the Patients as Partners Exhibits, Networking and Breakfast

Showing Events in 1 Track from 11:00am to 12:45pm

Morning Sessions

11:00AM - 11:25AM

Keynote: Clinical Trials FOR the Community, WITH the Community

Ifeyinwa (Ify) Osunkwo, MD, Chief Patient Officer, Novo Nordisk Rare Disease

11:25AM - 12:10PM

Interactive Session: Empathy in Action - Designing Solutions Across Healthcare Pathways by Deeply Understanding the Patient Experience

Wendy Erler, MBA, VP, Global Head, Patient Experience, Patient Advocacy & Patient Insights, AstraZeneca, Alexion Rare Disease

Deborah Howe, Former Director, Global Patient Recruitment and Engagement, Alexion Pharmaceuticals

Sabina Kineen, Patient Advocate, Lived-experience Expert

Rohita Sharma, PhD, Global Senior Director, Patient Insights & Solutions, Rare Disease Medical Affairs, Alexion Pharmaceuticals

12:10PM - 12:15PM

5-Minute Health Break

12:15PM - 12:45PM

Reducing Patient Burden: An Interactive “Pop-Up” Session

Luncheon, Networking and Optional Roundtable Discussions

Showing Events in 1 Track from 12:45pm to 01:45pm

Lunch and Optional Roundtable Discussions

12:45PM - 1:45PM

Showing Events in 5 Tracks from 01:05pm to 01:50pm

Roundtable 1

AI in Patient Engagement: Where Does it Fit in and How Can it Add Value?

Beth Brooks, Head, Patient Insights and Behavioral Sciences (PIBS), Sanofi

Roundtable 2

Establishing and Implementing SOGI Data Collection for Inclusive Clinical Research

Led By:

Amanda Beasley, PhD, Director, Representation in Clinical Research (RISE), Amgen

Shir Nenatel, MBA, Associate Director, Patient Advocacy and Clinical Trial Advocacy, Global Medical Affairs, Oncology, J&J Innovative Medicine

Roundtable 3

Enhancing Health Literacy and Addressing Language Challenges in Clinical Trials

Maureen Kashuba, Director, Health Literacy Projects; Medical Writing and Disclosure (MW&D), Merck

Roundtable 4

Redefining Advocacy Group Collaborations: Meeting Today’s Clinical Trial Demands

Beth Moody, Senior Manager, Patient Recruitment & Retention, Study Feasibility and Recruitment, AbbVie

Roundtable 5

Early-Phase Patient Engagement Strategies for Biotech and Medical Device Development

Kert Gunasekaran, Program Director, Science of Patient Input, Medical Device Innovation Consortium (MDIC)

Showing Events in 1 Track from 01:50pm to 03:10pm

Afternoon Track Choices

1:50PM - 3:10PM

Pharma, Biotech and Advocacy Case Studies on Patient Engagement Initiatives and Demonstrating Impact

Showing Events in 3 Tracks from 01:50pm to 03:10pm

Track 1: Pharma & Advocacy Collaborations / Early Patient Engagement

Agios: Integrating Patient Perspectives in the RISE UP Trial: A Model for Collaborative Trial Design

Holly John, Senior Director, Global Patient Advocacy, Medical Affairs, Agios Pharmaceuticals

Day One Bio: Accelerating Pediatric Cancer Research with a Multistakeholder Collaboration Framework

Christa Kerkorian, VP, Patient Advocacy, Day One Biopharmaceuticals

2:20PM - 2:40PM

Edwards Lifesciences: Prioritizing Patient Preferences to Influence Product Design and Regulatory Outcomes

Alissa Hanna, Director, Patient Engagement, Edwards Lifesciences

Rhoyge Traylor, Global Sr Director, Patient Engagement, Edwards Lifesciences

2:40PM - 3:00PM

J&J: Patient Partnerships that Enhance Recruitment, Retention, and Speed in Rare Disease Trials

Lisa Shea, MPH, RD, Director, Scientific Patient Engagement Research Leader, J&J Innovative Medicine

Track 2: DE&I / Community Engagement

Biogen: Achieving Health Equity through Authentic Patient Engagement from First Interaction

Katie King, MSHS, Associate Director, PCE DU Lead, Patient Centricity & Engagement, Global Clinical Operations, Biogen

Endo: Strengthening Site Partnerships to Improve Operational Efficiency and Enhance Patient Care

Rosalie Filling, VP, Senior Global Head, R&D Operations, Endo

Biogen & NMQF: Implementing Community-Centric Models to Enhance Diversity and Improve Outcomes in Clinical Trials

Savine DaCosta, Health Equity Lead, Biogen

Michael DeSalvo Solarte, MSW, Program Manager, Center for Professional & Strategic Alliances, National Minority Quality Forum (NMQF)

Track 3: Operationalizing / Scaling Patient Engagement

Lundbeck on How They Embed Patient Perspectives into Clinical Trial Infrastructure

Melissa Herman, Senior Specialist, Patient Insights, Global Value Evidence & Patient Insights, Lundbeck

J&J: Creating a Patient-Centric Operating Model to Drive Accountability and Transform Clinical Development

April Lewis, Head, Innovation Health, J&J Innovative Medicine

Gonzalo Linares, Global Head of Patient Advocacy, R&D, J&J Innovative Medicine

Pfizer: Ensuring Continuity in Patient Insights to Strengthen Product Development

Stephanie Christopher, Patient Engagement Lead, R&D, Pfizer

Medtronic: Developing Sustainable Patient Engagement through Internal Playbooks for Product Innovation

Korinne Jew, Sr. Director, Enterprise Clinical Research & Medical Science, Medtronic

Showing Events in 1 Track from 03:10pm to 03:50pm

Afternoon Break and Networking

3:10PM - 3:50PM

Afternoon Break and Networking

Showing Events in 1 Track from 03:50pm to 04:50pm

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

3:50PM - 4:50PM

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

Media:

Showing Events in 1 Track from 04:50pm to 05:00pm

10-Min Health Break

4:50PM - 5:00PM

10-Min Health Break

Showing Events in 1 Track from 05:00pm to 05:40pm

Afternoon General Session

5:00PM - 5:40PM

Strategic Panel: Laying the Foundation for Effective Diversity Action Plans in Clinical Trials

Amanda Beasley, PhD, Director, Representation in Clinical Research (RISE), Amgen

Willyanne DeCormier Plosky, DrPh, Program Director, Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT)

Katie King, MSHS, Associate Director, PCE DU Lead, Patient Centricity & Engagement, Global Clinical Operations, Biogen

Maria Restrepo, PhD, Program Director, Diversity in Clinical Trials, Medtronic

Kristin Tolbert, AVP, Health Equity Strategy, Jumo Health

AnneMarie Winkler, Associate Director, Clinical Trial Optimization and Innovation, GenMab

Showing Events in 1 Track from 05:45pm to 06:45pm

Networking Reception

5:45PM - 6:45PM

Annual Networking Reception and Optional Fundraising Activity

Showing Events in 1 Track from 07:45am to 08:50pm

Morning Remarks

7:45AM - 8:40AM

Registration, Tea / Coffee

8:40AM - 8:50PM

Co-Chairs’ Welcome & Opening Remarks

Co-Chairs:

Angela Bilkhu, Sr Global Patient Partnership Director, Hematology Product Development: Medical Affairs, Roche

Rucha Shah, Patient Advocate, and Assistant Clinical Research Project Manager, ECOG-ACRIN Cancer Research Group

Showing Events in 1 Track from 08:50am to 09:40am

Opening Keynotes

8:50AM - 9:15AM

Caregiver Keynote: Resilience and Hope - How a Clinical Trial Changed Garrett’s Life with ASMD

Justin Hopkin, MD, Patient Advocate / Division Chief, Hospital Medicine / Chairman Emeritus, University of Rochester / National Niemann-Pick Disease Foundation

9:15AM - 9:40AM

Keynote Fireside Chat: Embedding Patient Advocacy into Corporate DNA - Pathways to Lasting Impact

Fireside Guest:

Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics

Moderated By:

Sabina Kineen, Patient Advocate, Lived-experience Expert

Showing Events in 1 Track from 09:40am to 10:20am

ASK THE PATIENTS

9:40AM - 10:20AM

Clinical Trial Feedback from the Experiences of Patients and Caregivers for Better Planning and Execution

Christine McLennan, Associate Director, Clinical Trials, BioNTech US

Oronica Fields, Patient, Advocate & Community Ambassador

Jon Nelson, Lived-Experience Expert in Mental Health & Chief Pulverize Officer, Pulverize The Stigma

Sharon Rivera-Sanchez, Patient Advocate, Founder and Chief Executive Director, Trials of Color & Saving Pennies 4 A Cure

Showing Events in 1 Track from 10:20am to 11:00am

Grand Opening Break and Networking

10:20AM - 11:00AM

Grand Opening of the Patients as Partners Exhibits, Networking and Breakfast

Showing Events in 1 Track from 11:00am to 12:45pm

Morning Sessions

11:00AM - 11:25AM

Keynote: Clinical Trials FOR the Community, WITH the Community

Ifeyinwa (Ify) Osunkwo, MD, Chief Patient Officer, Novo Nordisk Rare Disease

11:25AM - 12:10PM

Interactive Session: Empathy in Action - Designing Solutions Across Healthcare Pathways by Deeply Understanding the Patient Experience

Wendy Erler, MBA, VP, Global Head, Patient Experience, Patient Advocacy & Patient Insights, AstraZeneca, Alexion Rare Disease

Deborah Howe, Former Director, Global Patient Recruitment and Engagement, Alexion Pharmaceuticals

Sabina Kineen, Patient Advocate, Lived-experience Expert

Rohita Sharma, PhD, Global Senior Director, Patient Insights & Solutions, Rare Disease Medical Affairs, Alexion Pharmaceuticals

12:10PM - 12:15PM

5-Minute Health Break

12:15PM - 12:45PM

Reducing Patient Burden: An Interactive “Pop-Up” Session

Luncheon, Networking and Optional Roundtable Discussions

Showing Events in 1 Track from 12:45pm to 01:45pm

Lunch and Optional Roundtable Discussions

12:45PM - 1:45PM

Showing Events in 5 Tracks from 01:05pm to 01:50pm

Roundtable 1

AI in Patient Engagement: Where Does it Fit in and How Can it Add Value?

Beth Brooks, Head, Patient Insights and Behavioral Sciences (PIBS), Sanofi

Roundtable 2

Establishing and Implementing SOGI Data Collection for Inclusive Clinical Research

Led By:

Amanda Beasley, PhD, Director, Representation in Clinical Research (RISE), Amgen

Shir Nenatel, MBA, Associate Director, Patient Advocacy and Clinical Trial Advocacy, Global Medical Affairs, Oncology, J&J Innovative Medicine

Roundtable 3

Enhancing Health Literacy and Addressing Language Challenges in Clinical Trials

Maureen Kashuba, Director, Health Literacy Projects; Medical Writing and Disclosure (MW&D), Merck

Roundtable 4

Redefining Advocacy Group Collaborations: Meeting Today’s Clinical Trial Demands

Beth Moody, Senior Manager, Patient Recruitment & Retention, Study Feasibility and Recruitment, AbbVie

Roundtable 5

Early-Phase Patient Engagement Strategies for Biotech and Medical Device Development

Kert Gunasekaran, Program Director, Science of Patient Input, Medical Device Innovation Consortium (MDIC)

Showing Events in 1 Track from 01:50pm to 03:10pm

Afternoon Track Choices

1:50PM - 3:10PM

Pharma, Biotech and Advocacy Case Studies on Patient Engagement Initiatives and Demonstrating Impact

Showing Events in 3 Tracks from 01:50pm to 03:10pm

Track 1: Pharma & Advocacy Collaborations / Early Patient Engagement

Agios: Integrating Patient Perspectives in the RISE UP Trial: A Model for Collaborative Trial Design

Holly John, Senior Director, Global Patient Advocacy, Medical Affairs, Agios Pharmaceuticals

Day One Bio: Accelerating Pediatric Cancer Research with a Multistakeholder Collaboration Framework

Christa Kerkorian, VP, Patient Advocacy, Day One Biopharmaceuticals

2:20PM - 2:40PM

Edwards Lifesciences: Prioritizing Patient Preferences to Influence Product Design and Regulatory Outcomes

Alissa Hanna, Director, Patient Engagement, Edwards Lifesciences

Rhoyge Traylor, Global Sr Director, Patient Engagement, Edwards Lifesciences

2:40PM - 3:00PM

J&J: Patient Partnerships that Enhance Recruitment, Retention, and Speed in Rare Disease Trials

Lisa Shea, MPH, RD, Director, Scientific Patient Engagement Research Leader, J&J Innovative Medicine

Track 2: DE&I / Community Engagement

Biogen: Achieving Health Equity through Authentic Patient Engagement from First Interaction

Katie King, MSHS, Associate Director, PCE DU Lead, Patient Centricity & Engagement, Global Clinical Operations, Biogen

Endo: Strengthening Site Partnerships to Improve Operational Efficiency and Enhance Patient Care

Rosalie Filling, VP, Senior Global Head, R&D Operations, Endo

Biogen & NMQF: Implementing Community-Centric Models to Enhance Diversity and Improve Outcomes in Clinical Trials

Savine DaCosta, Health Equity Lead, Biogen

Michael DeSalvo Solarte, MSW, Program Manager, Center for Professional & Strategic Alliances, National Minority Quality Forum (NMQF)

Track 3: Operationalizing / Scaling Patient Engagement

Lundbeck on How They Embed Patient Perspectives into Clinical Trial Infrastructure

Melissa Herman, Senior Specialist, Patient Insights, Global Value Evidence & Patient Insights, Lundbeck

J&J: Creating a Patient-Centric Operating Model to Drive Accountability and Transform Clinical Development

April Lewis, Head, Innovation Health, J&J Innovative Medicine

Gonzalo Linares, Global Head of Patient Advocacy, R&D, J&J Innovative Medicine

Pfizer: Ensuring Continuity in Patient Insights to Strengthen Product Development

Stephanie Christopher, Patient Engagement Lead, R&D, Pfizer

Medtronic: Developing Sustainable Patient Engagement through Internal Playbooks for Product Innovation

Korinne Jew, Sr. Director, Enterprise Clinical Research & Medical Science, Medtronic

Showing Events in 1 Track from 03:10pm to 03:50pm

Afternoon Break and Networking

3:10PM - 3:50PM

Afternoon Break and Networking

Showing Events in 1 Track from 03:50pm to 04:50pm

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

3:50PM - 4:50PM

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

Media:

Showing Events in 1 Track from 04:50pm to 05:00pm

10-Min Health Break

4:50PM - 5:00PM

10-Min Health Break

Showing Events in 1 Track from 05:00pm to 05:40pm

Afternoon General Session

5:00PM - 5:40PM

Strategic Panel: Laying the Foundation for Effective Diversity Action Plans in Clinical Trials

Amanda Beasley, PhD, Director, Representation in Clinical Research (RISE), Amgen