The impact of a cavernous malformation (CM) diagnosis is not only on a physical level. Emotional, social, interpersonal, cognitive and other aspects of a person are likely to be impacted. Patients can experience isolating effects that vary from one person to another. Families may face challenges that are sudden with little resources from traditional sources. The ability to access sources of reliable and credible information about cavernous malformation is a highly demonstrated need in the patient and family community. A complex set of barriers exist in accessing resources that directly impact the health and wellness of the cavernous malformation patient and family members or friends in their circle.
Aligned with our Vision and Mission our Peer Support Network is designed to provide support intentionally designed so we can truly know if that support is being perceived as meaningful and helpful to our community. Every single individual has their own unique journey, combined with the health care in their location, bundled with their own needs, level of support and knowledge about the disease. The levels and format of support needed and the methodology to provide it, will not be the same from one person to the next. A generic, broad stroke approach cannot possibly fulfill the nuances that each person faces in Canada once they or a loved one is diagnosed with cavernous malformation.
The Cavernous Malformation Canada Peer Support Network focuses specifically on the issues faced by individuals affected by cavernous malformation as well as family, friends and caregivers of those affected. We believe that such a model should be simple, while maintaining the needs identified to truly deliver meaningful support to everyone who accesses it. We commit to a model of support that embraces the values of our organization and is aligned with guiding principles including mutual respect, empathy, hope and self-determination at its core.
To accomplish this, our format has access points that meet the individual needs of our community, take a look below:
One of the largest areas of stress and barriers to care for our patient community is the navigation of the health care system. As a rare disease, patients commonly face delays in diagnosis, treatment, referrals to specialists and access to relevant evidence-based information about their diagnosis. Due to the nature of living with a disease with no cure and few options for treatment, barriers are often felt across many areas. These may include family and social relationships, loss, employment, income, safety, mobility, legal concerns, major life decisions, care needs, isolation and more.
At one of the most difficult times in their lives when they may also be experiencing symptomology, these challenges can be overwhelming and stressful.
With a massive set of aid resources at their disposal, care navigators meet one on one with peer patients and/or family members to listen to their CM journey and connect via their shared lived experience. Also, navigators have an acuity for finding any gaps in the current care plan of the peer patient or family member. While never a replacement for medical advice from medical professionals, care navigators answer questions, clarify information and provide approved relevant resources and research from our trusted knowledge sources, about cavernous malformation and existing symptomology. Following a semi structured process, they become the guiding resource for aid in our patient community. This includes a personalized person-centered approach towards the coordination of referrals to our known experts in Canada, to access second opinions, regulated health professionals and others concurrent with active support along the way. Identified barriers become substantially less as the care navigator provides alternatives to the challenges that individuals face with a cavernoma diagnosis.
If you would like to connect with a care navigator, please email prem@cavernousmalformation.ca.
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