Empowering Latino Families with Rare Diseases
A vibrant platform offering resources, support, and advocacy for Latino families navigating rare diseases.
What Makes Us Unique
Somos Rare is dedicated to education and connecting Latino families with one disease to our united community of all rare diseases. We focus on peer support, listening, and learning from the perspectives of all in order to best advocate for the needs of our families.
Peer Connections
Having a rare disease can be very lonely for a family, but no one needs to be alone on this journey. Join our monthly Zoom support Somos groups to connect with others facing similar challenges and share experiences in a safe, inclusive environment.
Organizational Support
Our ongoing research confirms that most rare disease nonprofits believe in inclusion and want to improve what they do today. We offer mentoring and training to empower organizations to expand their reach to embrace their Latino communities affected by rare diseases.
Bilingual & Culturally Thoughtful
Our team and advisors are fully bilingual and come from our rare disease community. Reaching our Latino families where they are as they navigate the healthcare system is vital to us.
Our Approach
Our Mission
To improve health outcomes for Latino families living with rare diseases through education, support, and empowerment.
Our Vision
To create a world where Latino families with rare diseases receive equitable care and thrive with confidence.
Our Core Values
We believe in inclusivity, community support, and the importance of cultural competency in healthcare.
Common Obstacles for Care
- Language barriers
- Hesitancy to question medical professionals
- Cultural barriers
- Immigration status
- Low income or lack of health insurance
Somos Rare is a safe space where you can ask questions, learn about your rare disease, and Kimberly help me word this please…
Our Impact
We are here to bridge the gap, empowering Latino families to navigate rare diseases with confidence and with a circle of community support. Rare disease areas we strive to amplify include peer education, reducing isolation, involvement, and increased Latino leadership.
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What Our Families Say
Somos Rare has been a lifeline for our family, providing crucial information and support tailored to our needs. We’re grateful to be part of such a caring community.
– Maria Garcia