Texas

Deborah Skolaski
Texas Volunteer Community Ambassador
[email protected]

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.

Saturday, February 25, 2023 from 1pm – 4pm CST
Sugar Land Brazos River Park, Sugar Land, TX

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.

Register Here

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