Patient advocate Abbie Cornett recently attended a webinar on the effects of specialty tiers and access to care for chronically ill patients. In today’s blog, she reports on her findings. [More]

It’s normal for parents to feel back-to-school jitters around this time of year. While our children may believe that summer is here to stay, we know better. School is just around the corner. And for many parents, that brings about a whole new set of questions and concerns: Is my son’s backpack big enough to hold his winter boots and his lunchbox? What’s so special about a No. 2 pencil, anyway? [More]

Has your illness changed the way you see yourself? This blogger encourages those with chronic illness to see themselves as more than a diagnosis. [More]

The recent BIO International 2014 conference offered helpful insights about drug developments that show great promise for the improved health of patients with debilitating rare diseases. Patient Advocate Abbie Cornett reports. [More]

Chronic illness is isolating, and it can be a comfort to connect with others who share our diagnosis. Sadly, sharing a rare illness is not always the magic glue that makes a friendship stick. [More]

As we celebrate America’s independence, it’s good to pause and reflect on what independence really means, especially when chronic illness may cause many to see freedom from a whole new perspective. [More]

Rare disease patients and advocates are well-known for being astute investigators. Gaining access to medical journals could provide them with information and insights to assist in treatment plans and improve quality of life. [More]

Illness. Disease. Condition. Just words until they apply to you. This blogger discusses the power of words and the way they are used to define our diagnosis, and sometimes to define us. [More]