It is not easy being rare. Being rare means that there is not a lot of knowledge, research, and treatment options available for youth and families affected by systemic autoinflammatory diseases (SAIDs). And that is exactly what the recently formed Can-SAID advisory group, a branch of Cassie + Friends (C+F), wants to change.

The Can-SAID advisory group comprises parents and patients with SAID diagnoses who are working with the Canadian Autoinflammatory Network (CAN) to raise awareness, offer education and support, advocate for change, and engage patients in research. So far, we have established a framework to guide its responsibilities, expectations, and communication methods. Our next steps are to establish an online presence and connect with the SAID community better to understand their current reality, challenges, and barriers. This information will guide our priorities, initiatives, and engagement over the coming year.

As for how you can get involved with us now, we are thrilled to invite you and the entire childhood rheumatic disease community to join us for RareTalks: Genetics and Childhood Rheumatic Diseases. This virtual education session will take place on Tuesday, February 28th at 4:30pm / 7:30pm EST and feature medical speaker Dr. Ashish Marwaha, a Clinic Medical Geneticist at Alberta Children’s Hospital with a special interest in pediatric rheumatology and family speaker Liz Devens and son Jason – both of whom have been diagnosed with JIA.

The session will conclude with small breakout group chats, providing an opportunity for families to connect with others navigating the same diagnosis as theirs.

We are excited to share that both Sara Ethier and Ian Stedman will be joining the session. Sara will be the guest emcee and will share a bit of her own family’s experience navigating her son’s rare autoinflammatory disease diagnosis, TRAPS. Sara, Ian Stedman and Apoorva Vajpayee from our Advisory Group will all help to facilitate the breakout group chats.

Looking forward to seeing you all there – don’t forget to register today.

More about our Guest Emcee and Parent Leader, Sara Ethier:

Sara Ethier has three children, one of whom is a child with a rare autoinflammatory disease. She discovered Cassie + Friends through the Alberta Children’s hospital in the hopes of finding support and resources to navigate the difficulties of parenting a child with a chronic and rare health issue.

Based out of Calgary, Sara is a member of the Canadian Systemic Autoinflammatory Patient Advisory Group (Can-SAID), a branch of Cassie and Friends (C+F’s). She recognizes the need for families to find connection, support, and information as they deal with the unique experiences and challenges of their autoinflammatory journey. An adjunct instructor in Communications and Liberal Arts Studies, Sara is personally interested in the power of storytelling as part of advocacy efforts to foster more awareness and understanding of these diseases and the impact they have on children and their families.

Read more about Sara’s sons story here.

You can also learn more about the work of Can-SAID on the Cassie + Friends website here.