The NF Clinic- Opening July 2021
We Won’t Stop Now
Living with neurofibromatosis (NF) is challenging enough without having to educate your doctor about the condition.
But that is the reality for patients in British Columbia after they receive a NF diagnosis.
With no NF expert or specialized clinic in the province for patients with NF to go to receive treatment, individuals are forced to become experts in managing their own care.
Can you imagine your doctor looking to you for answers and direction on how to treat your illness? That’s what patients with NF experience every day.
The Tumour Foundation of BC is on a mission to change that—but we need your help, as we get ready to open the province’s first NF medical care clinic.
Our dream of having a medical care clinic for patients with NF is at long last becoming a reality for the NF community in British Columbia.
Twelve years ago, our small team had a vision to create a multi-disciplinary medical clinic for patients, both paediatric and adult, affected with NF.
While we had explored a virtual clinic years earlier, we were still stuck on creating a "brick and mortar" clinic. In this plan, a patient would arrive at the hospital to see an entire team of NF specialists at one visit—it was the Cadillac of dreams! Unfortunately, both space and cost prohibited this from happening despite our determined efforts.
Then COVID-19 changed how healthcare was delivered. Ironically, the pandemic created an opportunity for the clinic to evolve. Within the chaos, we found a physician passionate about NF who agreed to spearhead the virtual clinic for BC patients.
The clinic will begin virtually seeing NF1 patients once a month in July. This will give us the necessary space to work out the exact model of care, and clarify how much demand exists in the community. The services provided will be consultative in nature with a physician who has an extensive knowledge of neurofibromatosis. As the demand for service grows, so will the clinic.
With the opening of the clinic, we will simultaneously build a patient registry to capture data for clinical trials and to build a business plan for an in-person clinic in the near future.
The Foundation Board has made the decision not to delay the start of the clinic to try to secure grant funding. Instead, we are asking our community to help us open our virtual doors by making a small donation here.
It has been a long journey to get to where we are today, but our belief that individuals with NF deserve better care than is currently being provided has fuelled us past dozens of obstacles. And we won’t stop now!