When I met my wife, Jill, I had a different view of healthcare than I do now. Since she learned she was gene positive with Huntington’s disease in 2018, I’ve been forced to look at healthcare through Jill’s eyes. We’ve gone to countless doctor appointments together, where I’ve witnessed…

One of the many issues my wife, Jill, faces as she battles Huntington’s disease (HD) is dealing with mental healthcare providers who treat HD patients by the book. Here’s what I mean: They follow a very specific, rigid protocol that makes her feel like she’s not being seen as an…

I’ve come to a realization that has impacted my viewpoint about the importance of voting and advocating for political candidates who prioritize healthcare. It was prompted by my wife Jill’s diagnosis of Huntington’s disease (HD) and the challenges we’ve faced navigating the healthcare system as we deal with…

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…

A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…

My wife and I are fortunate to have health insurance, which pays for some of our medical bills, but not all of them. My eyes glaze over when I hear words like deductibles and copays. I don’t understand insurance, and I don’t really want to. Jill has always taken care…

We can all agree that healthcare is not perfect. Even with insurance coverage, a trip to the doctor can be expensive. Travel to and from appointments can be time-consuming and costly, especially for someone with a disability. My wife, Jill, was diagnosed with the Huntington’s gene, just like her father,…