This Week in Rare Disease Breakthroughs 🧬 | Gene Therapies, Drug Approvals & Global Policy Shifts

From China’s first gene therapy approval for hemophilia B to Poland’s urgent call for EU-wide reform in rare disease care, this week’s roundup is packed with developments you won’t want to miss.

🔍 Key Highlights:

  • Imbria secures $57.5M to accelerate its nHCM heart drug with a new CEO at the helm
  • China approves BBM-H901, marking a historic milestone in gene therapy
  • Pfizer exits hemophilia gene therapy, while CSL stands by Hemgenix amid access hurdles
  • QTORIN™ gel shows 100% patient improvement in a rare pediatric skin condition
  • FDA greenlights self-injection option for VYVGART Hytrulo in gMG and CIDP
  • Folia and Novartis launch a digital, real-world C3G kidney disease study
  • Pretzel Therapeutics publishes a game-changing mtDNA drug discovery in Nature
  • Poland pushes for a unified EU strategy to close rare disease treatment gaps

đź’ˇ Whether you’re a researcher, clinician, or healthcare strategist, these insights offer a clear view of where rare disease innovation is headed—clinically, commercially, and globally.

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