Data DIY: Becoming a Data-Centric Community

A strong data program is one of the most valuable assets a rare disease organization can possess. It provides a solid foundation for strategy development and decision making. It makes your organization attractive to funders, investors, and research partners. It can even reveal new solutions to seemingly unsolvable problems.

This module assembles stories of advocacy leaders who’ve used data-centric strategies to create new paradigms, breakthrough barriers and achieve remarkable progress – often in surprising ways.

Cost: Free
Instruction Type: Self-Paced
Certificate: Yes

Thank you to our content developers!

David Spencer, PhD Vice-Chairman of the Board BioPontis Alliance for Rare Diseases
Michael Hund, MBA Chief Executive Officer EB Research Partnership
Ryan Fischer Senior Vice-President, Community Engagement Parent Project Muscular Dystrophy
Eric Camino, PhD Director, Research and Clinical Innovation Parent Project Muscular Dystrophy
Kristin Schneeman Director FasterCures
Lara Pullen, PhD Co-founder and Director Chion Foundation                                                                                            
Maria Picone Co-founder and CEO TREND Community
Linda Wade President & CEO Sickle Cell Association of Texas, Marc Thomas Foundation
Jordan Shumway Social Worker Sickle Cell Association of Texas, Marc Thomas
Khrystal K. Davis, JD Founder Texas Rare Alliance
Robyn Correll Carlyle, MPH, CHWI Dia de la Mujer Latina, Inc.
Paige Nues Director                                                                                       
Dan Glaze, MD MD Professor Baylor College of Medicine, Texas
Bernhard Suter, MD Assistant Professor Baylor College of Medicine, Texas