Texas Rare Action Network Page

Texas Rare Action Network Page Welcome to the Texas Rare Action Network Page. Please join our efforts in connecting and empowering

Texas Volunteer State Ambassador for the Rare Action Network (RAN), a grassroots network of rare disease patients, caregiver, advocates and organizations empowered by NORD.

02/08/2026

The State Medicaid Managed Care Advisory Committee provides recommendations and ongoing input to the Health and Human Services Commission on the statewide implementation and operation of Medicaid managed care.

NORD’s virtual Turkey Trot 5K completed! Please consider donating.
11/27/2025

NORD’s virtual Turkey Trot 5K completed! Please consider donating.

11/26/2025

Our Virtual Turkey Trot is back for year two! 🦃 Join from anywhere, Nov. 22-30. Walk, jog, run, or roll at your own pace to support NORD and the 1 in 10 Americans living with a rare disease.

Register by Oct. 24 to get your T-shirt in time for Thanksgiving! Sign up today: https://donate.rarediseases.org/TurkeyTrot2025

05/19/2025

🛑📣 URGENT ACTION ALERT: MAKE YOUR VOICE HEARD 📣🛑
PROTECT MEDICAID FOR FRAGILE TEXAS KIDS

📞 CALL YOUR U.S. REPRESENTATIVE NOW!
🗳 Capitol Switchboard: (202) 224-3121
❌ Say NO to the Dangerous Medicaid Cuts as currently proposed

The federal budget reconciliation bill that will cut $800 billion from Medicaid was again voted out of committee early this morning, and will now go to Rules Committee and then the U.S. House floor for a vote. Please call your US Congressional Representative TODAY to urge them to vote “no”.
This reconciliation proposal makes massive broad-based cuts of $800 Million+, adds more red tape for vulnerable Americans who rely on Medicaid, limits states’ ability to control provider taxes, and offers no real reforms— just massive, blunt cuts that put vulnerable lives at risk.

Here’s what’s missing:
🚫 NO requirement that cuts come from healthy populations.
🚫 NO requirement that cuts come from reducing fraud, waste, or abuse.
🚫 NO protections for people with disabilities, medically fragile children, or the elderly.

The effect of these broad-based Medicaid cuts with no protections which will create massive budget shortfalls for states such as Texas:
🚫 Slash services that medically fragile children and people with disabilities rely on, such as HCBS waivers
🚫 Add red tape for families in crisis
🚫 Push kids into hospitals or institutions
🚫 Force parents to leave the workforce
🚫 Increase long-term costs, not reduce them

We need:
✅ Targeted reforms—not indiscriminate cuts
✅ Real protections for the medically fragile
✅ Fraud, waste and abuse reduction--not support reduction for our most vulnerable

🗣️ Tell your Representative:
“OPPOSE any bill that cuts Medicaid without protecting vulnerable kids and families!”

🛡️ Let’s protect what matters most.
📍Advocate for Texas’s most vulnerable.
🧒🏽👩‍🦼🧑‍⚕️

Not sure who represents your family in the U.S. House of Representatives (Washington DC)? Click here to find your representative: https://www.house.gov/representatives/find-your-representative

Great Rare Disease event at the Houston Health Museum today. Thank you to Chevron for the grant that helped make it pos...
04/12/2025

Great Rare Disease event at the Houston Health Museum today. Thank you to Chevron for the grant that helped make it possible, and to our partners Baylor College of Medicine/Texas Children’s Hospital. A huge thank you to Dr. Lee for being the keynote speaker and to all our volunteers, exhibitors, and attendees!

04/04/2025

FREE Entry to Houston Health Museum, family friendly activities, and door prizes.

Family Day at The Health Museum for Rare Disease Community Members
Saturday, April 12, 2025
The Health Museum, 1515 Hermann Drive, Houston, TX
11:00 – 2:00 p.m. CDT

Texas Rare Action Network and Baylor College of Medicine/Texas Children's Hospital Genetics invites you to join patients, families, caregivers, and other rare disease community members at The Health Museum on April 12 from 11 to 2 p.m. for a family friendly event.

Attendees will have the opportunity to meet other patients and caregivers, get connected to community based organizations, and enjoy the museum for free!

03/24/2025

Family Day at The Health Museum for Rare Disease Community Members
Saturday, April 12, 2025
The Health Museum, 1515 Hermann Drive, Houston, TX
11:00 – 2:00 p.m. CDT

Texas Rare Action Network and Baylor College of Medicine/Texas Children's Hospital Genetics invites you to join patients, families, caregivers, and other rare disease community members at The Health Museum on April 12 from 11 to 2 p.m. for a family friendly event.

Attendees will have the opportunity to meet other patients and caregivers, get connected to community based organizations, and enjoy the museum for free!

Click below to register!

12/13/2024

🌍💜 is a global movement shining a light on rare medical journeys. Held every year on the last day of February, it’s coming up on Feb 28, 2025! As the official U.S. partner for Rare Disease Day, the National Organization for Rare Disorders (NORD) invites you to kick off the countdown to the celebration with us.

RSVP for next week's Rare Disease Day 2025 Kick-Off Webinar to learn how you can in support of everyone with a rare disease: https://bit.ly/4f8HI9n 🦓

10/30/2024

🎃👻🍬 It's almost Halloween! As many kids go trick-or-treating, the challenges of a rare disease can keep some from participating. So we're showcasing our Halloween costumes with the hashtag ! Post your photo and we will reshare it on our accounts!

Here is web-slinging 7-year-old Rowan! He is one of only about 200 Americans living with Coffin-Siris Syndrome, and he is feeling .

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1515 Hermann Dr
Houston, TX
77004

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