Please join Texas Rare Action Network on Rare Disease Day, February 29, 2020 at Sugar Land Town Square, Sugar Land, TX 77479 for a family friendly event featuring live music, games and opportunities to connect with other rare patients, families, caregivers, and stakeholders.
What's Happening Now?
Let’s Glow! Join Be Fierce Foundation for a one-of-a-kind blacklight family-friendly party to help bring awareness to kids and families battling rare diseases. Feb. 29, 2020 is Rare Disease Day, so we’re going big for FIERCE kids! Wear white…neon…or anything that glows as we rock The DoSeum. Snacks, sweets and activities will be planned throughout the evening. The party starts at 7 p.m. but doors open at 6:30. The DoSeum (San Antonio Children’s Museum), 2800 Broadway Street San Antonio, TX, 78209. www.befierce.org
Race for Ryland 5K Lace up your shoes and come run (walk) with us in to help raise awareness for rare diseases/disorders and honor our Rare Warrior Ryland Grace, born with Pyruvate Dehydrogenase Complex, on the rarest day of the year. February 29, 2020 at Walker Ranch Heritage Park, 12603 West Avenue, San Antonio Texas 78216. This is a Family and dog friendly event. Registration is open for runner 5 and up!
ROCK THE CAUSEBAH. Fundraiser concert for rare diseases. February 29, 2020 from 5:30pm-11:00pm at the North Door, 501 Brushy Street, Austin, Texas 78702. Live music, food, and an auction of amazing prizes from 5:30pm – 11pm. All ages are welcome and $10 at the door! Proceeds to benefit the National Organization for Rare Disorders and the Galactosemia Foundation. For more information visit: https://www.facebook.
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/
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 fourth 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
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]