We’re here to raise awareness and close the information gap around rare diseases that disproportionately affect underserved communities.
When you live with a rare disease, it can often feel like no one understands what you’re going through. Many of these conditions are overlooked, underdiagnosed, or misdiagnosed, especially in Black and Brown communities.
Here, you’ll find trusted information, expert insight, and a community that reminds you that you’re not alone in your journey.
Dr. Susan Mathai, a pulmonologist (lung doctor), reacts to a patient’s story and provides insights into pulmonary sarcoidosis.
When it comes to our health, these five affect our community the most:
Sickle cell disease is an inherited blood disorder that affects how red blood cells carry oxygen through the body.1 The misshapen cells can cause pain, fatigue, and organ damage. It primarily affects people of African descent.1
Sarcoidosis causes clusters of inflamed cells to form in different organs—most often the lungs, skin, or lymph nodes. Black Americans are three times more likely to develop sarcoidosis than white Americans and may experience more severe symptoms.2
CF is a genetic disease that causes thick mucus to build up in the lungs and digestive system, making it hard to breathe and absorb nutrients. Though it’s often associated with white populations, CF can affect anyone and is often underdiagnosed in people of color.3
MG is a chronic condition that affects how the nerves and muscles communicate, leading to weakness in the eyes, face, and limbs. Black women are more likely to develop MG at an earlier age and with more severe symptoms.4
AL amyloidosis happens when abnormal proteins build up in tissues and organs, most often the heart, kidneys, and liver, causing them to stiffen and lose function. Because its symptoms mimic other conditions, it’s often diagnosed late, especially in underserved communities.5
When we are not included in clinical research, we can’t be sure if a treatment will work just as well or be just as safe for us as it will for other races.
By participating in clinical research, we can give ourselves a chance to have treatments that may work better and be safer for us.
Learning more about clinical research can be a critical step in improving health outcomes for future generations.
If you still have questions, you are not alone.
NOWINCLUDED is a community created for us, by us to:
About Sickle Cell Disease. Retrieved from Centers for Disease Control and Prevention
Learn About Sarcoidosis. Retrieved from American Lung Association
What Is Cystic Fibrosis? Retrieved from Cystic Fibrosis Foundation
Myasthenia Gravis. Retrieved from National Institute of Neurological Disorders and Stroke
AL Amyloidosis. Retrieved from Amyloidosis Foundation
