“Texas: A big state with big hopes”
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✉️ Editor’s Note
I've learned living with CIDP that sometimes the most powerful medicine isn't always in a vial. Sometimes—often—it's in a community that actually gets it.
That's why we think it’s critical: Not every Texas family navigating rare disease has access to any kind of community support. Not every Central Texas patient knows about the clinical trials happening at Houston Methodist or UT Health. Not every person diagnosed CIDP realizes their neighbors in Dallas, Austin, and San Antonio are fighting the exact same fight.
That's why TexasNeuroRare exists. That's why - yes - even RarelySerious matters.
Communities like ours—the ones connecting people to real treatment information and actual support—they're what the medicine vials can't deliver. In a newsroom, they call that "holding power accountable." In healthcare, we should call it what it is: essential infrastructure.
Our Central Texas rare disease community deserves nothing less because Texas is quietly turning into one of the fastest-growing research hubs for rare neurological diseases in the country. With the Dementia Prevention and Research Institute of Texas (DPRIT) on the ballot this November and multiple NIH-funded centers expanding, families living with CIDP, SMA, ALS, and Duchenne muscular dystrophy may soon have more answers without leaving the state.
Read on please.
🔬 Feature Story: Gene Therapy Comes to Texas — Faster Than You Think
FDA and EMA approvals are reshaping treatment for rare neuromuscular diseases. In 2025 alone, therapies targeting SMA, Duchenne, AADC deficiency, and Friedreich Ataxia reached patients. Texas institutions are not just watching—they’re running the trials:
UT Southwestern (Dallas) — home to new AAV-based DMD studies and a Phase 1 trial for rare spastic ataxias.
Baylor College of Medicine (Houston) — leading NIH Consortium projects on neuro-immune repair.
UT Health Houston Neurology Center — testing sub-cutaneous immunotherapies for CIDP and GBS.
Each program links back to national registries like RDCRN and ClinicalTrials.gov, meaning Texans finally appear on the national research map.
🏥 Clinic Watch: Building Rare Neuro Excellence
Three Texas centers now hold NORD Rare Disease Center of Excellence status—UT Southwestern, Baylor, and Texas Children’s Hospital.
They’re expanding outreach through:
Tele-neurology pilots reaching rural patients within 200 miles of Houston and Lubbock.
Multilingual navigation teams that pair Spanish-speaking families with clinical liaisons.
Student fellowships in neuro-immunology to train the next generation of specialists.
Tip: If your clinic is within a hospital network, ask if they plan to apply for a DPRIT-funded partnership grant in 2026. Early participants may receive priority trial placement funds.
💡 CIDP Corner — The Transition Era
Trial Highlight: The ADHERE Transition study (NCT06637072) is evaluating patients switching from IVIg to efgartigimod PH20 SC—self-injected therapy that may save hours of infusion time.
Why it matters: Texas clinics in Houston and San Antonio are recruiting, and data will guide future at-home care options.
Next Step: Visit the GBS|CIDP Foundation International Trial Finder to see if you qualify.
🌎 Advocacy & Community
NORD & Global Genes Virtual Events offer Texas families scholarships for online education and caregiver training. Check NORD events for registration.
Rare Disease Day Texas 2026 planning is under way in Austin—volunteers wanted for patient stories and bilingual outreach.
EURORDIS & RD-Connect are now accepting U.S. participants for cross-border data sharing to improve genetic diagnosis speed.
📚 Resource Round-Up
NORD Center Map — Find Texas Excellence Centers
Texas Legislative Reference Library — Prop 14 DPRIT Overview
RDCRN Registry — Join Rare Disease Consortia
NIH GARD — Genetic and Rare Diseases Database
🗣️ Community Spotlight
“When the research maps finally include my ZIP code, that’s when hope feels real.” — San Antonio patient with CIDP
We love hearing stories like yours. Send updates or trial experiences to our trusted inbox: [email protected]
🧩 Glossary
Term | Meaning |
|---|---|
DPRIT | Dementia Prevention and Research Institute of Texas — a state initiative to fund neurological research. |
Gene Therapy | Treatment using genetic material to correct or replace faulty genes. |
AAV Vector | Viral delivery tool for gene therapy. |
NIH Consortium | U.S. National Institutes of Health program supporting collaborative rare disease research. |
Tele-neurology | Remote neurology consultation via secure video platforms. |
🤠 Check out Rarely Serious
Need a laugh after all this science? Check out our sister newsletter, where the only thing we diagnose is laughter.
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⚖️ Apolitical Statement & Disclaimers
Texas NeuroRare is a nonpartisan, patient-led publication. We do not endorse any political campaigns or candidates. Information about legislation or ballot initiatives is shared solely for educational purposes.
MEDICAL DISCLAIMER: This newsletter provides educational information reviewed by our medical advisory board. Content is not intended as medical advice. Always consult your healthcare provider before making treatment decisions. Clinical trial information is provided for educational purposes - eligibility and enrollment should be discussed with qualified medical professionals.
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