Somos Rare is built, led and advised by a network of Hispanic / Latinx individuals who understand rare diseases. These individuals have expertise in education, social work, public health, social justice, advocacy, care-giving, business, specialty pharmacy, biotech, clinical care, mental health, community health, and nutrition, etc. The 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.

The Somos Rare Program (We Are Rare Program) comes from a vision where Hispanic and Latinx rare disease families are readily able to navigate healthcare and achieve their best possible quality of life. Our objectives to achieve include:

• Patient families make informed healthcare decisions
• Local health partners are educated and able to navigate rare disease resources
• Patient families are empowered advocates hat champion health access needs

We accomplish this in three parts including:

1. Providing direct patient resources
2. Building bridges for connectivity
3. Supporting patient advocacy organizations on their journey to being inclusive

With so many different rare diseases to consider, awareness, knowledge and resources are often limited, and it is challenging to gain and maintain a current understanding of the rare disease landscape. Expanded awareness and outreach is needed for rare families, particularly in low income and underserved and marginalized populations.

Compared to more common diseases, communities affected by rare disease collectively experience inequities with respect to access to health care and disease burden. Factors beyond a patient family’s control can often prevent them from achieving their best health. Delays and misdiagnosis are common, limited treatment options and access to specialists can occur and high out-of-pocket costs can devastate families.

Given the prevalence of rare disease of 25-30 million Americans or 1 in 10 people and the significant and growing population of Hispanics in the US and a growing population of child-bearing age adults who are Latino, it is more critical than ever to focus on inclusion efforts of our Hispanic and Latinx populations. There is a clear need to connect, support, educate and advocate with this growing segment of the rare disease community.

Current efforts to serve the Hispanic population across rare diseases are generally modest. A few disease specific efforts are substantial, providing significant language and culturally appropriate and inclusive tools, resources, education, and support as well as organizational inclusion efforts in staffing, leadership, board makeup and volunteer support.

Families with limited English proficiency, limited health literacy and lower levels of education are less likely to ask questions and speak up when things did not seem right to them. – Source: JAMA Pediatrics, June 2022

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.

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 or interest in supporting the Somos Rare Program, please contact us at somosrare@upequity.org.