NF1 Awareness

07/03/2026

Have a safe and wonderful Holiday weekend!

05/18/2026

@ 17 — Neurofibromatosis Awareness Day — we recognize the strength, resilience, and courage of the millions impacted by NF. 💙
May 17 was chosen because the NF1 gene is located on chromosome 17, making this day a powerful reminder of the science, advocacy, and community driving progress forward.
To everyone living with NF: your story matters. Your strength inspires hope. And together, we continue moving closer to better treatments, greater understanding, and one day, a cure.

AwarenessDay

04/02/2026

https://www.facebook.com/share/p/1Nxou9qnjN/?mibextid=wwXIfr

📢 This study is still recruiting, particularly in the 12-15-year-old age group

We’re pleased to bring forward this research opportunity: Healx is recruiting participants age 12+ in the U.S. with NF1 and plexiform neurofibromas (PNs) for the INSPIRE-NF1 (NF119) study.

The study will evaluate whether the investigational drug HLX-1502 can shrink PNs or stop them from growing and assess its effects on quality of life and pain.

To participate, you must:
- Have a diagnosis of NF1
- Have a plexiform neurofibroma
- Be 12 years or older
- Live in the United States

Participants attend clinic visits, undergo MRI and safety evaluations, and take the study medication three times daily.

Medication is provided at no cost, and Healx will reimburse part of travel expenses to clinic sites.

To learn more, visit https://clinicaltrials.gov/study/NCT06541847