Cavernous Malformation Canada

The organization provides support through meetings group discussions and online/social media sources to peple affected by cavernous malformation and their families and friends. The organization educates the public about cavernous malformation a rare disease as well as other medical conditions that are related such as stroke headaches migraines brain injury epilepsy etc. The organization links patients with medical professionals across Canada that are specialized in cavernous malformation. The organization provides Webinar's to those affected by cavernous malformation their friends families and caregivers with guest speakers that are considered to specialize and have expertise in the disease. The organization does outreach to similar organizations and medical professionals about cavernous malformation. The organization participates in international meetings surrounding cavernous malformation about ongoing research studies and brings this information to the patient community. We participate in brain awareness week aligned with the International Brain Research Organization. During this initiative we support our members by having meditation sessions sharing brain facts posting emulsifier free recipes hosting events by zoom for our affected members and their caregivers. During Rare Disease Day we engage in communication collaboration with other organizations share patient stories and talk about cavernous malformation as a rare disease.

We initiated a permanent program (from our previous pilot) that directly supports patients via a case review process to get them to the experts across Canada in this rare disease. This includes step by step instructions on how to send referrals for their family physician to coordination of processes required. An support program that is specifically tailored to those hospitalized due to a cavernous malformation and for families after the loss of a loved one due to this disease. The start of Fast Fact Friday and Wednesday Wisdom on our social media/website to support patient and public knowledge. The development of in depth resource materials for our website in a printable format for patients and families. Having June every year designated in Alberta as Cavernous Malformation Awareness Month aligned with other nations with targeted activities.