Support people affected by neurofibromatosis NF1-Nf2-Schwannomatosis alberta Canada
BREAKING 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 marks a critical milestone for pediatric patients aged two years and older with neurofibromatosis type 1 (NF1) and symptomatic, inoperable plexiform
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 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!!!!
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How can you help?
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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!
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Our Mission
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How can you help?
Building support, awareness and community for those impacted by neurofibromatosis 1, neurofibromatosis 2 and Schwannomatosis.
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We have added numerous links to our webpage to assist people to find the information they need to navigate life with Neurofibromatosis.