Support people affected by neurofibromatosis 1-2-Schwannomatosis Reg: 5019921344
Welcome to Our World
October 2026 update
The Alberta Tumour Foundation is ready to grow. Here are some highlights:
1) We are in the process of applying for our charitable tax status with CRA.
2) We are working with the University of Calgary on research regarding cancer in patients with NF1. In the picture are board members Tim, Dena and Gail. WIth us is Dr. Javier Alfaro who is the lead in the NF-cancer research as well as the NF Clinic as noted below.
3) We are starting discussions of a possible NF Clinic in Calgary... It is it is a long process and the first meeting with the medical community is just scheduled.
We ask that you subscribe to our email list above.
Research
Our board is pleased to support any research into treatments, and even an eventual cure, for NF.
Peer Support
Who knows more about living with NF than a person with NF. We will help our NF community connect with each other.
Clinic
We are working with the medical community to create an dedicated NF community.
TREATMENT NEWS
We are thrilled to share that Alexion Pharma Canada Corp., AstraZeneca’s Rare Disease group, has reached an agreement with the pan-Canadian Pharmaceutical Alliance (pCPA) for KOSELUGO®!
This medication is now approved in Alberta. contact your pediatrician to see if this applies to your child.
This marks a critical milestone for pediatric
We are thrilled to share that Alexion Pharma Canada Corp., AstraZeneca’s Rare Disease group, has reached an agreement with the pan-Canadian Pharmaceutical Alliance (pCPA) for KOSELUGO®!
This medication is now approved in Alberta. contact your pediatrician to see if this applies to your child.
This marks a critical milestone for pediatric patients aged two years and older with neurofibromatosis type 1 (NF1) and symptomatic, inoperable plexiform neurofibromas (PN).
The successful pCPA negotiation means public drug plans across provinces and territories can now begin the process of listing KOSELUGO® on their formularies, making this life-changing treatment more accessible to families in Canada. Timing will vary by region, but the Letter of Intent (LOI) issued by the pCPA sets the terms for coverage.
KOSELUGO® is the first and only approved therapy in Canada for NF1-related symptomatic PN. This progress reflects the recognition of its value by Canadian healthcare payers.
We will continue to advocate for timely listing of this therapy on the provincial formulary and keep our community informed about the next steps. Together, we are making strides toward better care for those living with NF1.
Support Alberta Tumour Foundation's Mission
November 2, 2024
Thank you to everyone who attended our event. We raised some funds for our society, created some community awareness and had some great visits with our community. Thank you to all who helped put on this event.
- Thank you to the New Castle Pub and Grill for being Amazing hosts. The food and drink service was amazing.
Door Prize sponsors:
- Boston Pizza - Beverly location in Edmonton.
- Essentially Yours - Lise
- Jacek Chocolates - Edmonton and Sherwood Park
- Nitro Snowboards - Caitlin
- Rocky Mountain Soap Company
- Epicur - Karen
- Cattail Crossing Golf Course
- New Castle Pub and Grill
- Mary Kay - Holly
- Rare Care Foundation BC - Victor
- Amit and Kol - Amanda
And friends who provided prizes:
Tracy, Mary, Marlene, Diane, Lori, Kelly & friends, Bob & Chris, Carol & Bernard, Gail, Pat.
AND many thanks to all others who assisted us in many ways!!!!
LEARN MORE
How can you help?
Reach out, ask questions. People affected with NF are just like everyone else and want the same things in life as you do!
Contact us.
Our Mission
Building support, awareness and community for those impacted by neurofibromatosis 1, neurofibromatosis 2 and Schwannomatosis.
Providing Information
Providing Information
We have added numerous links to our webpage to assist people to find the information they need to navigate life with Neurofibromatosis.