Texas State Ambassador
What's Happening Now?
Rare Disease Day Houston February 23, 2019
The Health Museum, 1515 Hermann Drive, Houston, TX 77004
Hosted by Baylor College of Medicine/Texas Children’s Hospital
The 4th annual Rare Disease Day event will be held from 9AM – 1PM will feature over 35 rare disease organizations hosting booths. Invited speakers, Dr. Michael Wangler, pediatric geneticist, and social workers, Dinah Godwin, LMSW and Diane Murrell, LSW from Texas Children’s Hospital.
This is event is free, REGISTER HERE.
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Texas’ Rare Action 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/
Texas Rare Action Network Advocacy Luncheon took place on April 19, 2018 at the Law firm of Osha Liang LLP in Houston, Texas. There was a panel discussion on “How research incentives and healthcare coverage decisions impact patient health and access to new studies and drugs.”
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 Rare Action Network by joining and utilizing the resources available on this website to take action and create change.
State Report Card
In this third edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.
Scoring for State Policies
A: State policy meets all desired standards. An A grade is considered the model policy that other states should seek to enact.
B: State policy meets most, but not all desired standards
C: State policy on the given issue meets minimum standards
D: State has some policy in place, but it does not meet the standards of higher tiers
F: State has no policy provision for the relevant issue
David Mattax, Commissioner
Texas Department of Insurance
PO Box 149104
Austin, Texas 78714
Email for Assistance: ConsumerProtection@tdi.texas.gov
or 463-6515 in Austin
Consumer Assistance Program Email: ConsumerProtection@tdi.texas.gov