A rare disease is defined in the U.S. as one that affects fewer than 200,000 people.

With over 10,000 identified rare diseases, the collective impact is massive as 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.

Due to the fact that 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.

Many 2SLGBTQIA+ 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.

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, which is a life-threatening disparity.

Progress in rare disease requires 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 BIPOC and 2SLGBTQIA+ communities, aren’t left behind.

Join us in spreading awareness, driving change, and making rare disease advocacy as inclusive as it is powerful.