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What questions should we help to answer?
VAC-AVC was founded to strengthen patient care and provide patients, caregivers, families and healthcare professionals with a place to learn and meet. We are always keen to find out which questions about the care for vascular anomalies we should be helping to answer.
Please help us by downloading documents we share here and sending your ideas and suggestions to Wendy Moss, Director at Large Patient Support and Advocacy at firstname.lastname@example.org. Thank you.
Access to Alpelisib regained
The announcement by Novartis last year of the withdrawal of the Managed Access Program (MAP) for Alpelisib meant there was no way for patients to have ongoing access to this treatment in Canada.
Through the dedication of VAC-AVC Members; Dr Niina Kleiber (Ste-Justine Hospital, Montreal) working alongside Drs Vicky Price (IWK, Halifax) and Kelley Zwicker (CHEO,Ottawa), Alpelisib is again available for our patients through the Novartis Managed Access Program.
VAC-AVC arranged 2 online webinars to raise awareness of the benefits to patients; Dec 2022 from Dr Paul Isenring, Ottawa and April 2023 from Prof Guillaume Canaud, Paris. Guillaume Canaud is recognised as the world authority on Alpelisib for treating patients with PIK3CA-Related Overgrowth Syndrome (PROS). VAC-AVC advocated for the re-introduction of Alpelisib in Canada by facilitating discussions with Novartis.
Dr. Shanna Spring, Director at Large for Communications, is compiling a comprehensive list of locations across Canada that assess and treat Vascular Anomalies. Thank you for the responses so far. If you haven’t yet responded to the survey emailed out to your group, please do. You can click the button below to take you to the Survey form. Thank you for your help with this endeavour.