Zebra Inclusivity: Equity Challenges for Rare Disease Patients

While the term “Rare Disease” may sound like a distant concern that impacts few people, it is a pressing reality for an estimated 25-30 million Americans seeking equity in a healthcare system that often overlooks them. As an individual who is diagnosed with a rare disease myself, this reality is very near and dear to my heart. On International Rare Disease Day (observed on the last day of February), the world is called to action, spotlighting the urgency for fair treatment and care for those living with these conditions.  

Team Udayavani recently published an article (linked below) that discusses the impact of living with a rare disease and highlights the importance of advocacy and awareness. In addition to what’s mentioned in that article, we understand that the treatment of patients with rare diseases (often referred to as Zebras) is a much more complex issue within the healthcare industry. The stories of these patients mirror the very disparities Align & Embrace is determined to dissolve. It's not only about the rarity of their conditions but also the commonality of their plight—being misunderstood by a system ill-equipped to recognize the full spectrum of human health needs. It was this misunderstanding within the system that led me to go over 7 years without proper diagnosis or treatment, causing irreversible impacts on my health and mobility. 

With every rare diagnosis comes a test of our healthcare's inclusivity. When it comes to the medical care of people with marginalized identities, we know that there are distinct disparities in diagnosis, treatments, and health outcomes. When faced with a healthcare landscape that overwhelmingly dismisses a patient's needs based on cultural background and identity, the additional complexities of living with a rare disease makes treatment all the more challenging. 

Can we rise to meet the needs of all, no matter how unique or complex? Our commitment to culturally informed and responsive practices is not just aspirational—it's a necessity, now more than ever. Patients with rare diseases confront a dual challenge: battling their health conditions and the inequities of a system slow to adapt.

This struggle should not be theirs alone; it's a reflection of a deeper issue that needs to be addressed within our healthcare system—a lack of cultural sensitivity that leaves many behind. In this rapidly changing world, Align & Embrace acknowledges the historical and cultural factors that have shaped healthcare disparities. Our mission extends beyond the common; it reaches into the rare, the unique, and the often invisible.

As this year’s International Rare Disease Day has come and gone, we must stand in solidarity on this issue every other day of the year as well.  Let’s remember the power of empathy and understanding, because together, we can ensure that no patient feels forgotten, no matter the rarity of their condition. 

See the article from Team Udayavani here: https://www.udayavani.com/english-news/international-rare-disease-day-2024-a-call-for-equity-in-healthcare