One Rare was founded in 2019 by a mother and her adult son living with Duchene muscular dystrophy. The goal is to provide resources and opportunities that would improve the lives and futures of young adults, aged 18-35, living with rare disease, through education, mentoring, recreation and peer support.
While there are many supportive programs for families and children impacted by rare disease, teens and young adults often age out of programs when they need them the most. One Rare strives to provide relevant resources and opportunities for this community ranging from guidance on transitioning to adulthood to physical, mental and emotional self-care, networking and navigating social interactions, developing professional skills, navigating today’s healthcare systems, personal and patient advocacy, and general pursuit of happiness through mindful recreation and creative expression.
