Growing up, I always envisioned having a fairy-tale family. However, life had different plans. I met my now-husband in college, and after graduation, we got married with big dreams for our future. But as the saying goes, “Tell God your plans if you want to make Him laugh.”

July is National Minority Mental Health Awareness Month, a time dedicated to highlighting the unique mental health challenges faced by marginalized and minoritized communities. While much of the conversation rightly focuses on patients, we must also turn our attention to an often-overlooked group: caregivers. In the rare disease community, caregivers play a critical role, yet their mental health needs are frequently neglected. Understanding and addressing their needs is essential to the well-being of both caregivers and the patients they support.

Planning for pregnancy and parenthood can bring about complex feelings, particularly for people impacted by rare disease. During prenatal care, genetic testing can be an important and empowering tool for gathering information, family planning, and improving health outcomes. However, challenges in accessing, interpreting, and acting on prenatal genetic testing may be compounded for Black pregnant and birthing people due to structural racism deeply embedded in our healthcare institutions. Disparities in access to services like genetic testing directly limit the reproductive autonomy of Black people.

Throughout history, the role of nurses has been pivotal in providing care, comfort, and healing to communities. Among these dedicated healthcare professionals, Black nurses have played a significant yet often overlooked role in shaping the landscape of nursing in the United States. Their journey is one of resilience, perseverance, and trailblazing efforts that have paved the way for greater diversity and inclusivity in the field of nursing.

In healthcare, Artificial Intelligence (AI) stands as a transformative force, offering unprecedented opportunities to advance disease diagnosis, treatment, and management. Among the most compelling areas where AI can make a significant impact is rare disease, where its potential to drive health equity is particularly profound.

In the archives of medical history, there are moments that stand as beacons of hope, illuminating pathways to transformative change. The recent decision by the U.S. Food and Drug Administration (FDA) to approve the first gene therapies for sickle cell patients is undeniably one such milestone, heralding a new era in the treatment of a disease that has long cast a shadow over the lives of countless individuals.

In the intricate web of healthcare, the significance of an accurate diagnosis cannot be overstated. While diagnosis is pivotal for all individuals, its importance becomes even more pronounced when considering the realm of rare diseases and their intersection with health equity, particularly within Black communities. The disparities in diagnosis, treatment, and support that persist within these communities underscore the urgent need for a comprehensive reevaluation of healthcare practices.

Mental health is a topic that affects people from all walks of life, and its significance within marginalized communities cannot be understated. Among these communities, Black individuals face unique challenges and disparities in accessing mental health care. To compound these difficulties, the intersection of mental health and rare diseases presents an additional layer of complexity.

Having a health care provider who looks like you can mean different things to different people. For some, it may lead to a stronger sense of connection or the belief that both the patient and provider have shared life experiences. If patients feel more connected to their provider, they may be more willing to openly communicate about their health and health care experiences as well as trust and subsequently follow their provider’s recommendations, which could lead to better health outcomes.

For Black patients and families impacted by rare disease, seeking health care professionals who are also Black can be uniquely challenging. Unfortunately, years of systemic racism in the form of discriminatory laws, education policies and other practices prohibited or limited the ability of many Black individuals from obtaining a medical education and subsequently accessing careers in rare disease.

While it is widely accepted today that rare diseases are present within minority populations, not long ago, systemic racism and discriminatory practices in medicine and research led many providers to believe that Black people could not be diagnosed with certain conditions, including rare diseases. Instead, Black patients received a diagnosis of pseudo or false diagnoses, risking delayed access to treatment, worsening of the undiagnosed condition and possibly overall health.