RUN’s Data Collection Program Community Webinar
PATIENT-OWNED DATA TO ACCELERATE DIAGNOSIS, TREATMENTS & CURES FOR UNDIAGNOSED DISEASE
See how sharing patient information will collectively make a difference in finding a diagnosis for undiagnosed disease and other rare disease.
Please join us on August 24th at 9:00 AM Pacific/ 10:00AM Mountain/ 11:00AM Central/ 12:00PM Eastern for our first Rare and Undiagnosed Network’s Data Collection Community Webinar!
CLICK HERE TO PARTICIPATE IN THE RUN + RARE-X DATA COLLECTION PROGRAM WEBINAR
The Rare and Undiagnosed Network RUN has partnered with RARE-X to build a Data Collection Program for the undiagnosed community. By increasing access to research-ready data, we hope to accelerate the discovery of ground-breaking diagnoses, which can lead to treatments for the undiagnosed!
We chose to partner with RARE-X because we hope that by leveraging RARE-X’s data collection platform in conjunction with other undiagnosed rare disease communities, we can increase the likelihood that RUN will be included in cross-disease research.
The RUN’s Data Collection Program will …
- Inform researchers how – related disorders change over time
- Enable better data to design and use in clinical trials
- Provide patients the opportunity to participate in clinical trials
- Reduce the time it takes to study new medicines
- Speed up the time to get treatments to patients
- Enable the use of data as a placebo (instead of actual patients) in a clinical trial
There is no cost to participate.
ABOUT RARE-X
RARE-X is a 501(c)(3) nonprofit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE- X is collaborating with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support researchers developing treatments for rare disease patients.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).
Since RARE-X is a nonprofit, there is no cost to you or the undiagnosed community.
Learn more about RARE-X here.
Our goal is to make the process as easy as possible for you. By clicking on the link below, you can learn more about this one-of-a-kind Data Collection Program and begin the first step in making your patient information available to researchers.
Join the Undiagnosed Study run by RARE-X
CLICK HERE TO PARTICIPATE IN THE RUN + RARE-X DATA COLLECTION PROGRAM WEBINAR
Jointly hosted by RUN and RARE-X. There is limited space for the webinar. Sign up today!
Contact information: Gina Szajnuk (Zanik)
Co-founder and Executive Director
Rare and Undiagnosed Network (RUN) E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson To Listen: Searching for a Diagnosis – Global Genes by Daniel Levine To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk To Read: The Szajnuk Journey To Listen: “Push Through” by Ava Szajnuk RARECast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”
