A new year means new opportunities – opportunities to refocus and set new goals for the next 12 months. Last year, the #RAREis team introduced a new blog series to help shed light on an often-overlooked population in the rare disease community, by sharing the stories and perspectives of young adults living with rare diseases as part of the Year of the Rare Young Adult. Now that 2021 is here, my colleagues and I on the #RAREis team at Horizon have set a new goal to elevate the voices of another unique and often misunderstood group in the rare disease community, making 2021 the Year of the Rare Carrier.
During the Year of the Rare Carrier, our goal is to educate the rare disease community on the importance of genetic information and to empower rare carriers as they plan for the years to come. Throughout the year, #RAREis will focus the spotlight on the personal journeys of rare disease carriers through the #RAREis blog and connect members of the rare carrier community to educational resources, and sharing new website content related to rare disease genetics and genetic testing in the coming weeks.