Somos Rare
A RareLab Pilot Program
Somos Rare (We Are Rare)
Una gran familia para latinxs con enfermedades raras
(A great family for Latinos with rare diseases)
(A great family for Latinos with rare diseases)
The Hispanic/Latinx community represents a significant portion of the rare disease population. With an estimated six million Latinx individuals living with rare diseases in the U.S., there is a critical need to address the unique challenges faced by this community.
Language and cultural barriers pose significant obstacles to accessing quality healthcare for many Hispanic/Latinx patients. The prevalence of Spanish as a primary language, coupled with deeply rooted cultural factors and beliefs such as hesitancy to question medical professionals, can hinder diagnosis, treatment, and overall care.
Despite these challenges, the rare disease community has largely overlooked the cultural and linguistic needs of Hispanic/Latinx patients. To achieve health equity, it is imperative to incorporate cultural competency and language accessibility into all aspects of rare disease care, from education and support services to clinical trials and organizational development.
How We Work
Somos Rare is a comprehensive platform designed to meet the unique needs of Hispanic/Latinx families living with rare diseases. Our dual-pronged approach provides essential resources, support, and advocacy while empowering patient organizations to better serve their Latinx communities.
By offering a centralized hub for information, connection, and support, Somos Rare addresses critical areas such as health literacy, insurance navigation, doctor-patient relationships, clinical trials, and genetic therapies. Our goal is to improve health outcomes by reducing emergency visits, enhancing decision-making, and increasing medication adherence.
Recognizing the challenges faced by patient organizations in serving Hispanic/Latinx populations, Somos Rare also provides mentorship and training to build cultural competency and increase inclusivity at disease based rare disease organizations. We guide organizations in developing culturally appropriate materials, fostering inclusive leadership, and creating welcoming environments for Latinx patients and families.
Our team of dedicated professionals brings a deep understanding of both the Hispanic/Latinx culture and the complexities of rare diseases. Somos Rare managed, led and advised by a network of individuals within the Latinx community who understand rare disease. We have expertise in education, social work, public and community health, social justice, advocacy, caregiving, business, specialty pharmacy, biotech, clinical care, mental health, nutrition, and more. Our team also has a deep cultural awareness and sensitivity within US and Latin American communities. Direct program team members are passionate and fully fluent in Spanish and English. We are committed to driving positive change and empowering the Latinx rare disease community.
For more information in joining or interest in support this effort, please contact us!
