This program leads from a vision where Latinx rare disease families are readily able to navigate healthcare and achieve their best possible quality of life. Program focuses on:
- Patient families make informed healthcare decisions
- Local health partners are educated and able to navigate rare disease resources
- Patient families are empowered advocates that champion health access needs
The need is clear for improving health literacy in the Hispanic population so that equitable resources are available to drive understanding and navigating of the complex US healthcare system. Fundamentals include resources accessible in Spanish, direct outreach to families where they are at, and peer connectivity and networking opportunities.
Somos Rare is build, led and advised by a network of Hispanic / Latinx individuals who understand rare diseases. We have expertise in education, social work, public health, social justice, advocacy, caregiving, business, specialty pharmacy, biotech, clinical care, mental health, community health, nutrition, etc. Our team also has a deep cultural awareness and sensitivity within US and Latin American communities. Direct program team members are fully fluent in Spanish and English and have a passion and experience in rare disease.
Rare disease patient advocacy organizations are unsure how to serve their Hispanic and Latinx families. However, with focus, dedicated efforts and commitment, this can be changed and families can be supported. To address this unmet need, Upequity has developed a national initiative to provide rare disease health education and support to Hispanic and Latinx rare disease families in the US and its territories.
For more information in joining this program or interest in supporting the Somos Rare Program, please contact us.