Texas Volunteer Community Ambassador
What's Happening Now?
NORD Texas Rare Action and Baylor College of Medicine/Texas Children’s Hospital Genetics are partnering to host a family-friendly Rare Disease Day State Resource Fair.
One of the greatest challenges individuals living with a rare disease, their families, and patient advocates have is finding and accessing information and resources to help them advocate for themselves and their loved ones, as well as to raise awareness of issues facing others in the community. To help alleviate these daily burdens and ensure individuals and advocates can navigate local and state-based resources, we will be hosting a State Resource Fair for the rare disease community to coincide with Rare Disease Day.
Saturday, February 25, 2023 from 1pm – 4pm CST
Sugar Land Brazos River Overlook Park, Sugar Land, TX
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Texas’ RareAction Network to attend your event? Contact your State Ambassador today and learn more. Please check back regularly for news of upcoming events and activities in Texas.
Baylor Undiagnosed Disease Network
The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund, made up of medical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Through this study, we hope to both help individual patients and families and contribute to the understanding of how the human body works.
Due to the complex nature of the body and the diseases being investigated, we cannot accept all applicants into the study. However, we do fully review all applications we receive. For more information about the UDN and the application process, please visit: https://undiagnosed.hms.harvard.edu/sites/baylor-college-of-medicine/
In order to make meaningful change in the lives of rare disease patients and their families in the state of Texas, we need you! Become active with the RareAction Network by joining and utilizing the resources available on this website to take action and create change.
Kent Sullivan, Commissioner
Texas Department of Insurance
PO Box 149104
Austin, Texas 78714
Email for Assistance: [email protected]
or 463-6515 in Austin
Consumer Assistance Program Email: [email protected]