Cidpedia Newsletter PLUS

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Table of Contents

• Editor’s Note

• Quick News

• CIDP Spotlight (Quick Reads)

• CIDP Deep Dive: Navigating New Treatment Frontiers

• Resource Spotlight

• Texas Neurological Care Update

• Closing Thoughts

✉️ Editor’s Note

Welcome! This issue is a toolkit for smarter care, new science, and actionable resources—carefully selected to give your a head start. Our mission: Provide what matters most to those living with CIDP, fast. We have a new newsletter in the works and hope to launch soon. Hope there is something here for all.

🚨 Quick News

JUST IN TODAY:🚨 Breakthrough Alert: Sanofi's Riliprubart Enters Final Phase

Sanofi's Phase 3 clinical trial for riliprubart versus IVIg in CIDP patients has reached a critical milestone, with recruitment ongoing and primary completion targeted for late 2025. This experimental complement inhibitor could revolutionize CIDP care by offering an alternative to traditional IVIg maintenance therapy. The randomized, double-blind study employs quadruple masking to ensure rigorous results. If successful, riliprubart represents Sanofi's strategic commitment to advancing CIDP treatment options and could significantly impact the therapeutic landscape. For patients currently dependent on frequent IVIg infusions, this potential breakthrough offers hope for more convenient and effective long-term management.

Status: Active recruitment
Timeline: Results expected Q4 2025
Impact: Could provide first major IVIg alternative for maintenance therapy

Direct source links:
https://www.sanofi.com/en/media-room/press-releases/2025/2025-06-30-05-00-00-3107129

• FDA Fast-Track: Batoclimab for CIDP is seeing rapid progress, with a phase 3 trial showing an 84% response rate and significant IgG drop [source].

• First Subcutaneous Treatment Approved: Hizentra becomes the first FDA-approved, at-home infusion for CIDP maintenance—offering more independence for patients [source].

• Precision Medicine: UT Southwestern’s study on antibody-negative CIDP could make treatments more individualized. Interested? Get involved or learn more via their research page [source].

• Telehealth Expands: Second-opinion neurology consults now covered through 2026—ask your insurance or primary for access.

• Infusion Centers Grow: Austin Regional Clinic now scheduling CIDP infusions at several clinics [Austin Infusion Info].

🔦 CIDP Spotlight (Quick Reads)

Self-Inject Therapy: Real-World Notes

Across Texas, self-injecting patients are reporting fewer work absences, stronger family routines, and measurable weekly improvements in grip strength. Track your progress:
GBS|CIDP Foundation: Self-Assessment Guide

Tech for Flares

Wearable devices now monitor gait and tremor in real time, helping patients get ahead of relapses. Some insurance now covers digital grip testers—ask your provider if you qualify [NIH Early Detection Tools].

Coming Soon: New Guidelines

FDA is preparing updated CIDP diagnosis and treatment rules—likely to include rare variants and expanded home therapy coverage. Now’s the time to submit your feedback for public listening sessions.

🔬 CIDP Deep Dive: Navigating New Treatment Frontiers

Early Immunotherapy & Axonal Protection
Recent studies highlight the critical role of early immunotherapy to prevent long-term nerve damage in CIDP. A key study showed better outcomes for those starting treatment at the first sign of progression, not waiting for severe symptoms [CIDP Study].

Home Infusion: Practical Tips
Many Texas providers now coordinate home infusions. Patient-led management tools improve scheduling, track symptoms, and simplify insurance interactions. Get started:
IVIG Home Infusion FAQ | Home Infusion Advocacy

🧰 Resource Spotlight

• Insurance Navigator: Download advocacy letters, prior auth tips, and appeals templates here: GBS|CIDP Foundation Assistance

• Monthly Q&A: Submit clinical questions for our next expert panel.

• Community Picks:

  • “Hydration Tracker” app (for infusions/preps)

  • Free Medicare benefits review: 1-855-607-2526

  • Financial Assistance Portal – always up to date
    Financial Portal

🌟 Texas Neurological Care Update

Thank you for supporting CIDPedia. We are changing for the better. A short deep CIDP focused newsletter and a broader Texas-and beyond wide rare neuro care newslettter

Here’s what’s new:

• Spotlight: Regional Care Networks
  Patients seen at multidisciplinary centers (like Austin Regional Clinic, UT Health East Texas) now report faster diagnosis and coordinated switches between therapies.

• Regional Developments:

  • UT Southwestern is now a NORD Rare Disease Center of Excellence

  • Texas infusion centers are open weekends and evenings—find locations near Houston, Dallas, Austin

  • Home infusion now expanded throughout all metro areas

• Essential Numbers:

  • UT Health East Texas Neurology: 903-594-2958 or 1-800-728-2702

  • Texas NeuroRehab 24/7 Line: 1-800-252-5151

  • GBS|CIDP Foundation: Support Portal

🔗 Closing Thoughts

This issue is packed with verified resources and actionable news. Forward, bookmark, and share with your CIDP community.
Submit your questions or feedback: [email protected]
If this helped, please share CIDPedia with someone who needs reliable info today

Stay strong, stay curious, and keep shuffling forward. 🌱