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2021 Patient Advocacy Summit

December 9, 2021 @ 9:00 am - 12:30 pm


EDUCATE. ENGAGE. EMPOWER.
Thursday, December 9, 2021 9:00 a.m.-12:30 p.m.
A must attend virtual program for anyone who advocates on behalf of Patients!

Registration is open exclusively to Patient advocacy groups and
R&D company Patient advocacy and government affairs professionals.

<strong>REGISTER</strong> <strong>SPONSOR</strong>


Because Patients Can’t Wait®, BioNJ is thrilled to host our Sixth Annual Patient Advocacy Summit, on Thursday, December 9. Bringing together Patients, Patient Advocacy Groups, Caregivers and Industry virtually for a morning of Education, Engagement and Empowerment, attendees will gain valuable tools and insights, share best practices and meet key stakeholders within the health care ecosystem.

Please share with fellow advocates. Attendance is open and free exclusively to ALL Patient Advocacy Groups and R&D company Patient advocacy and government affairs professionals.*

9:00 a.m.-9:15 a.m.
Opening Remarks: BioNJ and Bristol Myers Squibb
9:15 a.m.-10:15 a.m.
EDUCATE: Ensuring Diversity in Clinical Trials
It’s imperative that clinical research represents a fully diverse population – inclusive of different races, ethnicities, ages, sex and preexisting conditions. The more diverse a group of research participants, the more we can learn about diagnosis and symptom experience, gain insight into unmet needs and identify barriers that will ultimately lead to the development of safe and effective treatments. In this session, you’ll hear examples from non-profit, industry and government on how they’ve become more inclusive and overcame barriers to research participation.

 

Moderator:
Lisa Schill, Patient Advocacy & Engagement Consultant, Former VP, RASopathies Network
Panelists:
Melissa Bishop-Murphy, JD, MBA, Sr. Director, National Government Relations & Multicultural Affairs & Co-Chair, Multicultural Health Equity Collective, Pfizer, Inc.
Lisa Salberg, Founder & CEO, Hypertrophic Cardiomyopathy Association
Karriem S. Watson, DHS, MS, MPH, Chief Engagement Officer, All of Us Research Program, NIH
10:15 a.m.-10:30 a.m.
QUICK TAKE: The Power of Diversity within a Patient Advocacy Organization
Where and how do you start on a path to a more diverse and inclusive work environment. Leave with tools and resources to get started – no matter the size of your organization.

 

Conversation Leads:
Gina Ross Murdoch, President & CEO, Multiple Sclerosis Association of America
Liza Gundell, CEO, The Family Resource Network/Autism Family Services NJ/Caregivers NJ/Epilepsy Services NJ
10:30 a.m.-11:30 a.m.
ENGAGE: Bringing New Medical Innovation to Market – Become a CEO for the Day
In this hands-on, interactive exercise, each attendee plays the role of CEO of a research-based biopharmaceutical company, collectively and anonymously voting on the various complex factors and decisions involved in the company’s drug development, pricing and marketing process. Through this fun exercise, you’ll develop a deeper understanding of the complexities of the biopharmaceutical business and the challenges of bringing innovative, life-saving medicines, vaccines and therapies to Patients.

 

Moderator:
Debbie Hart, President & CEO, BioNJ
Panelists to engage the audience:
Patient Advocate: Tom Whitehead, Co-Founder, Emily Whitehead Foundation
CEO: Jeffrey Nau, Ph.D., President & CEO, Oyster Point Pharma and BioNJ Board Member
Investor: Josh Barer, Managing Director, Hibiscus BioVentures & Barer & Son Capital, LLC
11:30 a.m.-11:35 a.m.
BREAK
11:35 a.m.-12:00 p.m.
QUICK TAKE: Who Is Advocating for the Advocates?
Advocates can experience mental fatigue from day-to-day pressures, the emotions of Patient support and other stressors such as industry collaborations. You’ll leave this session with tools and resources to address the burnout or stress an advocacy role can bring.

 

Discussion Leaders:
Nita Patel, RN, Executive Director, Patient & Professional Advocacy, Amicus Therapeutics
Jessica Rispoli Joines, MGC, CGC, Director, Genetic Counseling Master’s Program, Rutgers, the State University of New Jersey
Debbie Yobs, President & Executive Director, CJD Foundation (Creutzfeldt-Jakob Disease)
12:00 p.m.-12:30 p.m.
EMPOWER: “Dreams: My Journey with Multiple Sclerosis”
Join Kristie Salerno Kent as she shares her personal and intimate journey with multiple sclerosis. Kristie’s decision to never give up transformed denial and fear into hope…and ultimately gave her the strength to achieve her life-long dream of becoming a mother, songwriter and singer.

 

A national advocate, Kristie is dedicated to helping others pursue their passions and face their health challenges with positivity and purpose so all Patients get the care they need and deserve.

 

“I like to say that the word ‘dreams’ may end in ‘ms,’
but MS doesn’t have to end our dreams.”

~Kristie Salerno Kent

A must attend program for anyone who advocates on behalf of Patients! Please share with fellow advocates. Attendance is open and free to ALL Patient Advocacy Groups and R&D company Patient advocacy and government affairs professionals.* Register now. Reach out to KMinton@BioNJ.org to learn about Sponsorship Opportunities.

*Registration is open exclusively to Patient advocacy groups and R&D company Patient advocacy and government affairs professionals.

Thank you to our sponsors

Details

Date:
December 9, 2021
Time:
9:00 am - 12:30 pm
Event Category: