Data DIY – Becoming a Data-Centric Community

A strong data collection program can help you achieve all of your organization’s goals – beyond treatment development. Join us at the Houston Marriott Medical Center/Museum District, Monday, February 3rd through Wednesday, February 5th, 2020, to explore what more you can do with data and how data can be a community unifier.

In this workshop, you’ll learn how rare disease advocacy leaders harness the power of data to:

» Fine-tune your research strategy and attract investors

» Leverage data to support early diagnosis and better clinical care

» Manage multi-stakeholder collaborations


To get the most from this experience, we recommend bringing a team member, researcher or clinician to help you jumpstart your strategy for the coming year.

Missed Data DIY workshops #1, #2 or #3? View them here.

The deadline to book through the Global Genes room block is Monday, January 15, 2020.

Travel Scholarships:

Travel Scholarships are available and will be automatically provided to all individual patients or patient advocates in the rare disease community or staff of rare disease nonprofit organizations or support groups who not only register but attend the meeting. Travel scholarships are to be used for meeting-related expenses such as registration, travel, parking, mileage and hotel accommodations and will be mailed post-event. For more information, please contact

If you have any questions, please contact the events team.

From: 02/03/2020 - To: 02/05/2020

08:00 AM - 05:00 PM UTC-05:00

6580 Fannin Street, Houston, Texas, United States of America