PLEASE SCROLL DOWN TO SEE THE ISSUES WE ARE WORKING ON

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 wendy.moss@cw.ba.ca. Thank you.

Please scroll down to see the issues we are working on

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.

Download the Survey Results

FAQs

What is Vascular Anomalies Canada (VAC)?

Vascular Anomalies Canada (VAC) is a non-profit organization dedicated to supporting individuals and families affected by vascular anomalies, including both rare and common types. We provide resources, support, and advocacy to help improve the lives of those living with these conditions.

What kind of support does VAC offer?

VAC offers a range of support services, including informational resources, educational materials, and support groups. We also connect individuals and families with healthcare professionals who specialize in vascular anomalies, helping them access the best possible care. Additionally, we provide emotional support and guidance to help individuals navigate their journey.

Who can benefit from VAC's services?

VAC maintains a network of healthcare professionals who have expertise in treating vascular anomalies. Through our connections and partnerships, we can help individuals and families find the right specialists in their area. We can provide recommendations and assist with making appointments, ensuring that patients receive the specialized care they need.

Are there support groups available for individuals and families affected by vascular anomalies?

Yes, VAC facilitates support groups where individuals and families can connect with others who understand their experiences. These groups offer a safe and supportive environment to share stories, exchange information, and provide emotional support. We also organize events and conferences where people can meet face-to-face and learn from experts in the field.

Does VAC provide financial assistance or medical guidance?

While VAC does not directly provide financial assistance, we can offer guidance and information about available resources. We can help individuals navigate insurance coverage, disability benefits, and other financial matters related to the treatment and management of vascular anomalies. Our goal is to ensure that individuals have the information they need to access the support they require.