Texas

Deborah Skolaski
Texas Volunteer Community Ambassador
[email protected]

What's Happening Now?

RAN_Megephone_RGB 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/

COVID-19 Resources & Information

State Resource Page

The Texas government has created this helpful resource website in response to COVID-19. https://texas.gov/#covid19

Telemedicine FAQ: CLICK HERE

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.

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State Information

Emergency Relief Resources for Families with Rare Diseases in Texas

Hurricane Harvey left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be even more detrimental. Together, NORD staff worked with our Texas RareAction Network State Ambassador, Debbie Skolaski to create the Texas Emergency Relief Resources packet, a list of emergency relief resources available for download that may be helpful for rare disease families in the Houston area.

DOWNLOAD HERE