TAR SYNDROME AWARENESS MONTH

📅 April: National TAR Syndrome Awareness Month

This month, we recognize more than a diagnosis—we spotlight the realities of living at the intersection of race and disability. 💡

Founded in 2021 by @JylanRoss, the @tarsyndromeassociation  launched this national awareness month to educate, support research, and uplift voices impacted by TAR Syndrome—a rare genetic condition causing low platelet counts and the absence of forearm bones (radius) in both arms.

✨ Why Jylan’s Work Matters

As a Black man living with TAR Syndrome, Jylan’s journey is both personal and purpose-driven. He’s faced the harsh realities of medical bias, lack of awareness, and racial disparities in care—and now he’s turning that lived experience into action. By educating, raising funds, and uplifting others by navigating disability and identity, he’s proving that awareness is the first step toward real change. 🛑

📊 Did You Know?

🔹 TAR Syndrome affects fewer than 1 in 100,000 people.

🔹 Awareness is still extremely limited, especially in Black communities.

🔹 Black individuals with rare conditions often face delayed diagnoses, limited access to care, and double discrimination: systemic racism and medical bias.

🔹 Disability stigma in the Black community adds another barrier, making it harder to speak up, seek help, or be seen.

🧠 When stigma meets silence, it hurts.

 Too often, disabilities are hidden, misunderstood, or dismissed. In Black communities, where strength and perseverance are often celebrated, acknowledging disability can feel isolating. But true strength is also found in visibility, vulnerability, and advocacy.

💡 That’s why @jylanross ’s work with the @TARSyndromeAssociation is so powerful—it challenges stigma while building a community. Through awareness, education, and compassion, we can create change that’s both inclusive and impactful.

👉🏾 Learn how to support and get involved:

 🔗 https://tar-syndrome-awareness.square.site

📢 Let’s support Black-led disability advocacy and ensure rare doesn’t mean invisible. 🖤♿

 #TARSyndromeAwarenessMonth #DisabilityAdvocacy #NationalMinorityHealthMonth #SupportBlackCharities #tarsyndromeawareness #disabilityinclusion #JylanRoss #StigmaFree