EMA Endorses First Immunotherapy Option for Advanced Anal Cancer
- February 5, 2026
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FDA Places Clinical Hold on REGENXBIO’s MPS Gene Therapy Programs After Tumor Case Review
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Every rare diagnosis has a beginning. One person's journey can spark awareness, lead families toward answers, and help light the path for others who are still searching. Awareness starts somewhere, and often, it starts with one. #rarewordoftheweek #RareDisease #rarediseaseawareness #PatientWorthy
An amazing thing- patients owning their own data, and deciding how to share it for research for the benefit of all. Congratulations! National MPS SocietyWe’re excited to announce a patient-owned and controlled, independent registry for mucopolysaccharidoses (MPS)! Sanofi is proud to provide the initial funding for this Registry, and to support linkage to patient data from its historic MPS I registry into the new National MPS Society Registry when appropriate patient consents are in place. 💜
“This is more than a transfer of data—it is a recognition that behind every registry entry is a child, an adult, or a family navigating the complexities of rare disease. Their voices matter. Their experiences matter. And now, they will have ownership and control over how their stories contribute to scientific progress.” — Terri Klein, President & CEO, National MPS Society
🔗 Read the full announcement: mpssociety.org/en/news/mps-registry-2026/
#MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome
Obesity has many causes—genetic predisposition, hormonal imbalances, medication side effects, environmental factors, stress, and more. It's not a simple issue with a simple answer. Understanding the complexity is the first step toward real solutions. #obesity #symptoms #PatientWorthy
#shareyourstory here: bit.ly/4dV7gru
