Covid19 Illuminates Communication Barriers for LEP Patients in the U.S

Unfortunately, when patients and doctors don’t speak the same language, patients face incredible difficulty understanding treatments. This results in more healthcare resources being used than required due to more readmissions, more testing, and more extended periods of hospital stays.

Rare Disease and Advocacy among Underserved Populations and Patients in the US

Despite advancements in science and medicine, under 5% of known rare diseases have FDA-approved treatments. For the rest, the reality is that some will have to get palliative care while others will just treat the symptoms to get the disease to remission.

Navigating COVID19 As A Lupus Warrior of 20+ Years

My doctors and I talk a lot when I see them, we have a conversation and, I’m grateful for this. Because, before I went into kidney failure I didn’t have great doctors, they were horrible doctors.

Navigating COVID-19 as a Chronically ill Patient | Ash Canty

When there are any power dynamics or things that feel uncomfortable, it creates a unhealthy situation and a scary one that doesn’t feel good. I have had a lot of experiences with doctors who were white and who were dismissive of what I was saying.

Cystic Fibrosis Patients and COVID-19: Why Social Distancing is Critical

There are roughly 30,000 people living in the United States with Cystic Fibrosis. A Chronic disease caused by CFTR gene mutation. This mutation impacts the way protein is made in the body leading to inefficient salt transport over the cell membrane resulting in the buildup of sticky, thick mucus in different tissues and organs. 

Amplifying the Voice of Chronically ill Patients Amid COVID-19 Pandemic

25 – 30 million people in the United States, 30 million people in the European Union, have been diagnosed with a Rare Disease. During this time we ask that you help patients living with chronic illnesses by adhering to public health officials recommendations.