The journey through life with a rare disease is often filled with uncertainty. Often times, this takes a toll on the mental health of people living with rare disease and their loved ones. This session will explore ways to navigate life while coping with uncertainty, feel affirmed that your thoughts and feelings are valid and …

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In this opening session, Connie will share her story of being diagnosed with two rare disorders – factor seven deficiency and pemphigus vulgaris – after living with symptoms for her entire life. Connie was raised in a home and culture in which one did not discuss sickness or challenges or show weakness, and these diagnoses …

Continue reading “Opening Keynote: Resilient & Rare”