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Thursday, June 28 • 9:00am - 10:15am
#407: Beyond Adult Patients, Untapped Advisors in Clinical Development: Adolescents, Parents, Siblings, and Spouses

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Component Type: Session
Level: Intermediate
CE: ACPE 1.25 Knowledge UAN: 0286-0000-18-691-L04-P; CME 1.25; IACET 1.25; RN 1.25

As organizations involve patients, caregivers, and other untapped advisors in the design of clinical trials, questions exist about how best to incorporate the perspectives of these audiences and validate their contributions. Panelists will discuss how organizations are integrating these advisors in drug development.

Learning Objectives

Describe the advantages, practical difficulties, and unanswered questions with involving children, young adults, parents, siblings, partners and other untapped advisors in the clinical development process.


Jennifer Helfer


2017-2018 National Rare Diseases Caregiver Survey Findings
Grace Grace Whiting, JD

Establishing a European Network of Young Persons Advisory Groups to Increase the Involvement in Pediatric Clinical Research
Begonya Nafria Escalera, MEd

What's Love Got to Do with It? Illuminating the Caregiver Treatment Journey
Ann M Moravick

avatar for Begonya Nafria Escalera

Begonya Nafria Escalera

Patient Advocacy - Coordinator, Fundacio Sant Joan De Déu
Patient Advocacy Coordinator at Institut de Recerca St. Joan de Déu and Fundació St. Joan de Déu. Experience in coordinating/managing projects in clinical research on rare diseases. Coordinator of YPAG (Young Persons’ Advisory Group)-KIDS Barcelona and RareCommons platform. Coordinator... Read More →
avatar for Jennifer Helfer

Jennifer Helfer

Patient Advocacy, bluebird bio, Inc.
Jennifer Helfer joined bluebird bio in December of 2015. As part of the Patient Advocacy team, Jen serves as a conduit to patient organizations and advocates. Patient Advocacy is responsible for building and sustaining trusted collaborations with stakeholders to address patient and... Read More →
avatar for Ann Moravick

Ann Moravick

President, Rx4good
Ann Moravick is President and Founder of Rx4good, a virtual consultancy focused on empowering organizations to put patients (and caregivers) first. She started Rx4good to gain greater return on patient impact from public/private sector partnerships and guides clients in integrating... Read More →
avatar for Grace Whiting

Grace Whiting

President and Chief Executive Officer, National Alliance for Caregiving
C. Grace Whiting, J.D., is the President and CEO of the National Alliance for Caregiving, a non-profit committed to advancing family caregiving through research, innovation, and advocacy. Ms. Whiting has led national and global research including Caregiving in the U.S. 2015 with AARP... Read More →

Thursday June 28, 2018 9:00am - 10:15am EDT
Room 209 Boston Convention and Exhibition Center 415 Summer Street, Boston, MA 02210 USA
  05: Patient Engagement, Session