Inflamed Brain Alliance

Healing Stories Therapy Program Over the past year IBA has developed a robust peer support initiative through the Healing Stories therapy program. Led by a dedicated volunteer Peer Support Lead and supported by five facilitators this program currently provides support to over 50 members across Canada. Our Hope Companions peer support groups are designed for young adults (ages 18-29) caregivers family members and friends impacted by PANS/PANDAS. These informal groups offer emotional social and informational support helping individuals connect with others who share similar experiences. Currently all support meetings are conducted online with plans to offer online group therapy sessions led by a registered therapist starting next year. Healing Insights Education Program IBA's Healing Insights education program has focused on recruiting medical professionals to teach our eLearning courses on PANS/PANDAS. To facilitate this IBA launched the Clinicians’ Network Canada’s only professional group connecting hands-on providers from multiple disciplines who treat PANS/PANDAS. We have hosted two educational webinars to date including an inaugural session that attracted nearly 500 registrants. We anticipate offering more webinars this year and are working toward CME accreditation for our next event which will be geared toward medical professionals. Healing Discoveries Research Program This year the Healing Discoveries research program made significant strides by collaborating with a real-world data collection company and the University of Calgary to launch the first-ever Canadian PANS Patient Registry. This registry expected to be live by the end of 2024 aims to improve the clinical care pathway for PANS/PANDAS patients. Volunteer Engagement IBA remains a volunteer-driven charity offering various opportunities to serve the PANS/PANDAS community. We have 12-15 active volunteers supporting ongoing initiatives with additional volunteers providing episodic support during events. Ongoing roles include grant writing peer support leadership advocacy digital media storytelling copy editing initiative planning and community engagement. On average each volunteer contributes approximately 5-6 hours per month.