Jennifer McNary, co-founder of One Rare, discusses this innovative new program designed to improve the experiences of young adults with rare diseases.
As Ms. McNary explains, a lot of patient advocacy support is aimed toward young children. However, as more children with rare diseases receive life-extending/life-saving therapies, many children with rare diseases like Duchenne muscular dystrophy are living well into young adulthood. Most advocacy groups are still not catering to this cohort so the goal of One Rare is to provide resources and opportunities to improve the lives of young adults, aged 18-35, living with rare diseases. This is done through education, mentoring, and peer support, all of which has been tailored to fit the needs of young adults (e.g., sexual/relationship education, financial health, etc.)
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