Discover How Pharma is Unlocking the Power of CX to Deliver Better Experiences for Rare Disease Patients and HCPs

The Pharma CX Rare Disease Summit will bring together pharma marketing and customer experience leaders to explore how pharma is measurably improve the rare disease customer experience. Hear from the experts and learn what pharma is doing to deliver better experiences for rare disease patients and HCPs, while driving business impact.

PanAgora Pharma CX Series events are unique within the industry because attendance is limited to ensure each event is industry-led. Our goal at every Pharma CX Series event is to maintain at least 65% attendance from pharmaceutical, medical device, and diagnostics companies.

Delegates of the Pharma CX Rare Disease Summit will have ample opportunities to connect with fellow attendees, engage with speakers and panelists, participate in interactive conference sessions and workshops, and network with peers.



Location
Boston Marriott Cambridge
50 Broadway
Cambridge, MA 02142

Date & Time
May 9, 2024
09:30AM - 04:00PM EST
Reception to Follow
PRESENTED BY
Why Attend the PanAgora Pharma CX Rare Disease Summit?

PanAgora Pharma CX events are unique within the industry because attendance is limited to ensure each event is industry-led. Of the attendees, our goal is to maintain at least 65% attendance from pharmaceutical, medical device, and diagnostics companies (mainly comprised of senior-level marketing and customer experience executives within those organizations). This is done to create a peer-to-peer knowledge sharing and learning environment that prioritizes meaningful relationship building amongst like-minded pharma marketing and customer experience business leaders.
Speaking Faculty
CO-HOST
Brad Aufderheide
KLICK
CO-HOST
Seth Painter
OSTRO
Larry Bressler
CHIESI

Megan Nolan
Rare Parenting
Bonnie Perkins
Alexion
Marshall Thompson
Alnylam PHARMACEUTICALS
Aprill Lane
UCB
Jason Plant
Ardelyx
Jennifer Anderson
TaKEDA
Ahmed Elsayyad
OSTRO
Wendy Erler
Alexion

Elaine Kang
Springworks therapeutics
Gemma Mayman
PFIZER
Noah Bryant
NOVOCURE
Nathan Cheng
ALNYLAM

Shannon Nolte
BIOGEN
Joseph Leo
NOVO NORDISK
Deb Katz
SPRINGWORKS THERAPEUTICS
Conference Agenda
08:30 AM
REGISTRATION OPEN
Welcome Breakfast

Hosted in the Exhibition Area

09:30 AM
Co-Hosts Opening Remarks 

Seth Painter, Director, Strategic Partnerships, Ostro
Brad Aufderheide, SVP, Oncology & Rare Disease Strategy, Klick


09:45 AM
PANEL

Redefining the Rare Disease Patient Experience in Pharma

• What is the state of the patient experience for rare disease patients and pharma?
• How is empathy being incorporated to improve the rare disease patient experience?
• Share an example of how a patient experience has affected your product / market / therapy area
• Share an example of how data and technology play a role when considering the rare disease patient experience
• How do we push further to include patient experience and patient voice into all aspects of pharma?

Wendy Erler, VP, Global Head Patient Experience: Patient Centricity, Insights and Advocacy, Alexion
Marshall Thompson, Sr. Manager, Digital Marketing, US Rare Disease, Alnylam Pharmaceuticals
Gemma Mayman, VP, Specialty Care Patient Solutions and Engagement Lead, Pfizer

Moderated by:  Megan Nolan, Founder & Editor-in-Chief, Rare Parenting


10:20 AM
Consumerizing Rare Disease - A Better Patient and HCP Experience

We know that a better experience is possible. Look at all we’ve learned from the consumerization of ordering movies, shopping for prescription glasses, or hailing a ride to the airport. It seems that every other segment of society but healthcare has figured out that the secret to a successful engagement is to get you the information, goods, or services you’re looking for with the least amount of scrolling and clicking. So why not rare disease?

Ahmed Elsayyad, President and Co-Founder, Ostro


10:40 AM
CASE STUDY 

Inspired By: Patient Engagement Project

Bonnie Perkins, Senior Director, Patient Engagement, Rare Disease, Alexion


11:05 AM
Networking Break


11:35 AM
Rare Diseases Require a Rare Approach

Brad Aufderheide, SVP, Oncology & Rare Disease Strategy, Klick


12:00 PM
PANEL

Partnering with Advocacy Groups to Build Community and Improve Outcomes


This panel will discuss the role of advocacy groups in the overall commercial model and customer experience.

• Patients are obviously at the forefront of advocacy groups, but what is the role of advocacy as it pertains to HCP?
• Examples of advocacy partnerships and how they contribute to optimal CX
• Are there any areas where advocacy should not be involved?
• Who is further along in leveraging technology—pharma or advocacy?
• What are some ways that technology is being leveraged collaboratively to optimize CX in rare disease?

Aprill Lane, US Advocacy Lead, Rare Disease, UCB
Deb Katz, Patient Advocacy Director, SpringWorks Therapeutics

Moderated by: Larissa Thomas, Patient Marketing & Head Project Voice, (Former) Takeda


12:30 PM
Networking Lunch
01:30 PM
Develop Effective Marketing Content to Build, Cultivate and Optimize HCP Relationships that Drive New Patients Engagement with HCPs

• Learn how marketing content impacts the outcome and affects the perception of HCPs and what you can do to change that
• Elevate the content presented to HCPs to build invested relationships that are valuable for them and their patients
• Collect feedback from HCPs and your sales peers on what is working and what needs to change to make your product stand out

Jason Plant, Rare Disease Commercial Leader, Director, National Accounts, Ardelyx


01:55 PM
PANEL

Building Blocks for Improving the Rare Disease HCP Experience

• As an industry, how are we doing in terms of CX for rare disease providers?
• What is unique about rare disease HCPs and their experience, and how do we approach that?
• Does the rare disease HCP experience even matter?
• What are some specific initiatives, campaigns, techniques or technologies that are improving the rare disease HCP experience?

Larry Bressler, Global Head of Value and Access, Rare Diseases, Chiesi
Jennifer Anderson, Director, HAE Customer Innovation and Operations, Takeda
Elaine Kang, US Marketing Director, SpringWorks Therapeutics

Moderated by: Elizabeth Beringer, President, Spring & Bond


02:30 PM
Networking Break



03:00 PM
Taking the Leap: Building Patient-First Communities on Social Media

Creating vibrant and authentic social media communities has historically been difficult in the pharmaceutical and medical device industries. However, with the rise of new tools, platforms, and the continued rise of personalized user experiences, there has never been a better time for brands to build on social media. In this presentation, we will go through the strategies and learnings you need to know to build your brand on social in 2024.

Noah Bryant, Social Media and Digital Marketing, US, Novocure


03:25 PM
PANEL

Data + Rare Disease CX

• How are pharma marketers leveraging data and analytics to improve patient experiences in the rare disease space?
• How can data-driven insights be utilized to enhance engagement with HCPs?
• What metrics are most valuable for rare disease patient and HCP marketing initiatives?
• How is AI being utilized in rare disease patient and HCP marketing efforts?
• What are the biggest challenges with data implementation and common pitfalls to avoid?

Nathan Cheng, Commercial/Medical Affairs Data Business Partner, Alnylam
Shannon Nolte, Sr. Manager, Rare Disease Customer Data and Insights, Biogen
Joseph Leo, Sr. Manager, Data Strategy - Rare Disease Data Partner, Novo Nordisk

Moderated by: Paul Reuscher, VP, Product Innovation, Forian


04:00 PM
End of Conference

Networking Reception / Happy Hour to Follow
Sponsorship & Exhibition Opportunities
Sponsors & EXHIBITORS
MEDIA PARTNERS
Room Block at the Pharma CX Rare Disease Summit 2024
Venue: Boston Marriott Cambridge
50 Broadway, Cambridge, MA 02142
This year's Pharma CX Rare Disease Summit will take place at the historic Boston Marriott Cambridge, conveniently located in the pulsating and inspiring neighborhood of Kendall Square, with quick access to Boston.

The Pharma CX Rare Disease Summit has a room block at Boston Marriott Cambridge in Kendall Square for the night of May 8th. To reserve a room at the discounted room block rate ($529/night plus tax), please call the hotel and reference the: PanAgora Pharma CX Rare Disease Summit 2024 Room Block or using the hotel booking link.
Don't Miss the PanAgora Pharma CX Rare Disease Summit 2024!

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