Welcome, Home!
Stripes of Solidarity is a patient-powered movement. This space uplifts the voices that are too often left out of the conversation. Through storytelling, resource-sharing, and community-building, Stripes of Solidarity bridges the gaps between rare disease, equity, and identity. Whether you’re a patient, ally, policymaker, or professional, you’re invited to join the call for more inclusive, informed, and compassionate advocacy.
RARE RAINBOW CREATIVE SHOWCASE
Join us Friday, June 27, 6:00p.m. – 9:30p.m. EST for the Rare Rainbow Live Creative Showcase, a one-night-only virtual experience spotlighting LGBTQ+ creatives in the rare disease community. This powerful celebration uplifts expression, identity, and advocacy—from striking visuals to moving performances.
Want to Take the Virtual Stage?
If you’re a queer rare disease advocate with a story to tell through creation—visual, digital, written, or performance—you’re invited to submit your your work to present live and share the message behind your piece—alongside your connection to the rare disease journey.
After the performances, the audience will vote live to crown our Rare Rainbow Creative of the Year—who will receive a custom prize mailed to their door! Runner-ups will also receive a special digital feature across our platforms.
Not interested in making a submission? No worries! You can still register, attend, and cast your vote for the Rare Rainbow Creative of the Year.
Submissions are due June 6, and registration is now open—apply or reserve your spot! Come for the talent, stay for the connection, and leave feeling seen, heard, and celebrated.
Rare Disease 101: The Basics You Need to Know
What Is a Rare Disease?
A rare disease is defined in the U.S. as one that affects fewer than 200,000 people. But with over 10,000 identified rare diseases, the collective impact is massive—more than 30 million Americans are living with a rare disease. Globally, that number reaches over 300 million people.
Quick Facts:
1 in 10 people in the U.S. has a rare disease.
Over 70% of rare diseases are genetic.
About 50% of those affected are children.
95% of rare diseases have no FDA-approved treatment.
The average diagnosis time is 5-7 years and often involves multiple misdiagnoses.
Why Are There So Few Treatments?
Because each rare disease affects a relatively small number of people, pharmaceutical companies often don’t see a profitable return on investment. Developing treatments is expensive—and with fewer patients, the financial incentives simply aren’t there without support. This is known as the “valley of death” in drug development.
This is where policy and regulatory incentives come in:
Orphan Drug Act (1983): Offers benefits like tax credits, FDA fee waivers, and 7 years of market exclusivity.
Accelerated Approval Pathways: Allow faster review of promising treatments.
Grants & Research Funding: Help fill gaps that private investment won’t cover.
Still, the road from discovery to access is long, especially for diseases that affect marginalized communities.
Rare Disease Is Not One Story—It’s Thousands
Behind every rare disease is a person. A family. A story.
And while the science is complex, so are the social inequities.
LGBTQ+ Rare Disease Community:
Many LGBTQ+ individuals face bias or stigma in clinical settings, impacting diagnosis and care.
Few rare disease clinical trials collect data on sexual orientation or gender identity, leading to invisibility in research.
BIPOC Communities:
Black, Indigenous, and other people of color are more likely to be undiagnosed or misdiagnosed, especially when symptoms don’t align with white-centric diagnostic models.
BIPOC patients face lower clinical trial enrollment and reduced access to genetic testing and specialist care.
For bone marrow transplants, Black and Brown patients have dramatically lower match rates—a life-threatening disparity.
Why Awareness & Action Matter
Progress in rare disease doesn’t just require science—it demands solidarity.
We need:
Inclusive research that reflects all communities.
Affirming healthcare providers who understand intersectionality.
Stronger policies to accelerate treatment development and access.
Public support to hold institutions accountable and bring urgency to invisible diseases.
Stripes of Solidarity exists to amplify these truths and build a world where rare disease patients—especially those from LGBTQ+ and BIPOC communities—aren’t left behind.
Join us in spreading awareness, driving change, and making rare disease advocacy as inclusive as it is powerful.
DISCLAIMER
Stripes of Solidarity is part of the personal brand and platform I’ve been building as a rare disease advocate, storyteller, and equity champion. Rooted in my lived experience as a Black, queer, young adult rare disease survivor, this space was created to center intersectionality, build community, and offer accessible, inclusive guidance across the rare disease world.
The goal of SOS is to be a supportive and complementary resource within the rare disease ecosystem—especially for those who may not see themselves reflected in existing efforts. While I deeply value and respect the work of many organizations in this space, this platform was developed independently and intentionally to uplift perspectives and priorities that are often overlooked.
It’s not a nonprofit, and it’s not affiliated with any one group—it’s a growing, evolving space for connection, learning, and healing. Whether you’re brand new to rare disease or a seasoned advocate or clinician, my hope is that Stripes of Solidarity serves as a trusted and human-centered guide to what this world is, and what it can become.
-Nate Milam II
Founder, SOS