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Monday, June 25 • 3:00pm - 4:15pm
#145: A New Ecosystem: The Nature of Relationships Between Patient Advocacy Groups and Sponsors

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Component Type: Forum
Level: Intermediate
CE: ACPE 1.25 Knowledge UAN: 0286-0000-18-543-L04-P; CME 1.25; IACET 1.25; RN 1.25

This interactive session will convene three distinct patient advocacy groups (PAGs) who will discuss how their unique business models are being used to build long-term relationships with sponsors. The session will also describe how PAGs resource, fund and execute interactions and collaborations with sponsors and discuss opportunities, challenges and solutions arising from the business side of patient engagement, such as maintaining independence, understanding potential conflicts of interest and ensuring transparency

Learning Objectives

Identify three distinct patient advocacy group (PAG) business models being used to build long-term relationships with sponsors; Describe how PAGs resource, fund and execute interactions and collaborations with sponsors; Discuss opportunities, challenges and solutions arising from the business side of patient engagement, such as maintaining independence and ensuring transparency.

Chair

Kristin Voorhees, MA

Speaker

The Business of Patient Engagement
Alice Bast

Necessary Relationships: The Effect of Pharmaceutical Relationships on Rare Disease Patient Advocacy Organizations
Katie Jensen, MPA

A Day in the Life: Making Patient Engagement Real
Suzanne Schrandt, JD


Speakers
avatar for Alice Bast

Alice Bast

CEO, Beyond Celiac
Alice Bast is CEO of Beyond Celiac, an organization that accelerates patient-centered research. She engages with government, researchers and industry, serving on the National Advisory Council for AHRQ and as a member of the Digestive Disease National Coalition, plus others. Alice... Read More →
avatar for Katie Jensen

Katie Jensen

Development Director, The LAM Foundation
Katie is a nonprofit development professional with over 5 years experience in rare disease patient advocacy organizations. She is focused on strategic patient engagement, advocacy, fundraising, and innovative ways to amplify the patient voice. Katie holds her Master's in Public Administration... Read More →
avatar for Suzanne Schrandt

Suzanne Schrandt

Director, Patient Engagement, Arthritis Foundation
Suz Schrandt, JD, is Patient Engagement Director at the Arthritis Foundation. She was previously Deputy Director, Patient Engagement for PCORI, where she helped to launch key efforts including the Engagement Rubric. Schrandt's patient engagement focus stems from her own rheumatological... Read More →
avatar for Kristin Voorhees

Kristin Voorhees

Senior Manager, Patient Advocacy, Ultragenyx Pharmaceutical
As Senior Manager of Patient Advocacy at Ultragenyx Pharmaceutical, Kristin supports, educates, and empowers the rare disease community and strives to make a positive difference in the lives of patients, caregivers and families. She is trained in health communications and has led... Read More →

Monday June 25, 2018 3:00pm - 4:15pm
Room 153ABC Boston Convention and Exhibition Center 415 Summer Street, Boston, MA 02210 USA
  05: Patient Engagement, Forum