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Monday, June 24 • 11:00am - 12:00pm
#112: Collecting Better Patient Experience Data: Lessons Learned from Patient Organizations

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Component Type: Forum
Level: Basic
CE: ACPE 1.00 Knowledge UAN: 0286-0000-19-526-L04-P; CME 1.00; IACET 1.00; RN 1.00

We will present methods and success stories from three rare disease patient organizations that have collected meaningful patient experience data. Panelists will share their insights and challenges for data collection including surveys and patient registries.

Learning Objectives

Describe the importance of participating in registries and the methods by which data is collected; Identify strategies for overcoming the challenges of patient engagement to help provide pathways towards accelerating rare disease research.


Laura Trutoiu, PhD


Monica Weldon

Pamela Mace, RN


Pamela Mace

Executive Director, Fibromuscular Dysplasia Society of America
At the age of 37, Pam Mace was diagnosed with a rare disease called Fibromuscular Dysplasia (FMD). She struggled with her health for the first few years after her diagnosis and realized that medical professionals had no real understanding of the disease. Pam became an advocate for... Read More →

Laura Trutoiu

Director of Research, The Association For Creatine Deficiencies
Laura is a computer scientist and the Director of Research for the Association for Creatine Deficiencies. She holds a PhD in Robotics from Carnegie Mellon University and she has conducted research in several top industry labs including Disney Research, Industrial Light and Magic... Read More →
avatar for Monica Weldon

Monica Weldon

President/Chief Executive Officer, Bridge the Gap - SYNGAP Foundation
In November of 2012, Monica's twin son, Beckett, was the first to be diagnosed at Texas Children's Genetics Clinic with the gene mutation SYNGAP1 (6p21.3). When Beckett was 4 months old, she noticed he was not meeting the same milestones as his twin sister. Monica then began a journey... Read More →

Monday June 24, 2019 11:00am - 12:00pm PDT
Room 5AB San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA
  05: Patient Engagement, Forum |   03: Data-Data Standards, Forum