About Us
About SOS
Born from lived experience and built with community at its core, Stripes of Solidarity (SOS) is an advocacy platform created by and for those living at the intersections of rare disease and queerness or any other underrepresented identity.
What started as one survivor’s fight for survival after a life-threatening misdiagnosis became a rallying cry for something greater: a world where every rare disease patient, especially those who are Black, queer, disabled, or historically excluded, feels seen, heard, and centered. SOS was founded by Nathanael Milam II, a rare disease warrior who turned his own journey through misdiagnosis, transplant, and advocacy into a mission to build spaces rooted in equity, creativity, and belonging.
Through storytelling, education, and unapologetic visibility, SOS is shifting how the rare disease community shows up; louder, prouder, and more connected than ever. We develop creative events, inclusive resources, and affirming guides that break barriers and build bridges. Whether you’re a patient, provider, policymaker, or passionate ally, there’s a place for you in this dazzle.
Rare disease advocacy is about reimagining the systems that failed us and building something far more powerful in their place.
Together we’re creating a future where no one feels rare alone.
Future of SOS
Stripes of Solidarity is building infrastructure for equity. The future of SOS is one where rare disease advocacy is a force that actively shapes research, policy, care, and culture. We envision SOS evolving into a trusted, community-powered platform that bridges patients, advocates, researchers, clinicians, and policymakers, while staying rooted in the lived realities of those most often left out.
In the years ahead, SOS aims to:
Expand equity-centered policy education and advocacy tools that help patients understand and influence the systems impacting their care
Support inclusive research and clinical trial access by centering patient voice, trust, and representation
Create sustainable creative campaigns, storytelling projects, and media platforms that normalize intersectional rare disease identities
Develop pathways for mentorship, leadership development, and paid opportunities for rare disease advocates from marginalized communities
The future of SOS is about shifting power away from exclusionary systems and toward community-led solutions. We’re building a better rare disease ecosystem.
Our Mission
Stripes of Solidarity exists to amplify underrepresented voices in the rare disease space, equip advocates with meaningful tools, and promote equity across research, policy, and care. Through lived experience, creative advocacy, and intentional collaboration, we aim to challenge systems, close gaps, and champion solidarity across the rare disease community.
Our Vision
A world where every rare disease patient, no matter their race, background, or identity, is seen, heard, and supported.
Our Values
At Stripes of Solidarity, how we do the work matters just as much as what we do.
Our values guide every campaign, collaboration, and conversation, ensuring that SOS remains accountable to the community it serves.
Equity Over Optics
We prioritize meaningful change over performative inclusion, centering those most impacted by systemic gaps.
Lived Experience as Expertise
Patients, survivors, and caregivers are leaders, educators, and decision-makers.
Embracing Intersectionality
We recognize that race, gender, sexuality, disability, and socioeconomic status shape every care journey and must be addressed together.
Creativity as Resistance
Art, storytelling, and visibility are powerful tools for healing, advocacy, and cultural change.
Radical Belonging
There is no “right” way to be a rare disease patient or advocate. Everyone deserves space, dignity, and community.
Why Stripes?
Zebras are the symbol of rare disease and just like zebras, no two stripes are exactly alike. In this space, “stripes” represent both the marks we carry and the strength we gain from our stories.
Stripes of Solidarity is a reflection of that symbolism. It is a reminder that while each rare disease journey is unique, we are stronger when we show up for one another across diagnoses, identities, and communities. This platform was built on that principle: solidarity is a way forward.