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.
Regaining access to Alpelisib
The announcement by Novartis of the withdrawal of the Managed Access Program (MAP) for Alpelisib means there is no way for patients to have ongoing access to this treatment in Canada. Niina Kleiber, CHU Ste Justine and VAC Secretary, Kelley Zwicker, CHEO Ottawa, initiated a survey to determine how, when and why Alpelisib is being prescribed to advocate for ongoing access.
You can view the results below.
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.