Important Update for Adults Living with NF1
Canada’s Drug Agency has issued a draft recommendation not to publicly reimburse selumetinib (Koselugo) for adults with NF1 who have symptomatic, inoperable plexiform neurofibromas. The recommendation for eligible children remains unchanged. You can find the draft recommendation on the CDA website.
This is not the final decision.
The Tumour Foundation of BC has until July 30 to respond and your voice can make a difference.
If you are an adult living with NF1, or care for someone who is, we want to hear:
- How NF1 affects your daily life
- What access to treatment would mean for you
- How this recommendation could impact you or your family
If writing your story feels overwhelming, we’ll help.
Reach out to us and we’ll work with you to ensure your experience is included in our submission.
Our organization remains committed to advocating for equitable access to treatments and ensuring the voices of people living with NF1 continue to be heard throughout this process.
Every lived experience helps us show decision-makers what it means to live with NF1 beyond what clinical trials can measure. If you’d like your voice included in our submission, please contact us before July 30.
Your story is evidence
