Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Accessing treatment can be hard for many. Many rare disease drugs are expensive. Some are...2 min read
Understanding Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP): The BasicsGetting a diagnosis with a name as long as "chronic inflammatory demyelinating polyradiculoneuropathy" can feel scary. It is normal to feel worried...3 min read
Your Guide to the CIDP Diagnosis JourneyIf you have chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), you may have spent weeks or months searching for answers. Maybe your hands and...3 min read
Overcoming Infusion Anxiety for People With Primary Immunodeficiency (PI)Living with primary immunodeficiency (PI) means your body has trouble fighting off infections. This is because your immune system, which is supposed...4 min read
The Power of Predictability: How Routine Helps Manage My Rare DiseasesThrough trial and error over the years, I've learned that my body functions best on a routine schedule, regardless of what I...2 min read
5 Tips for Coping with Stress and Chronic IllnessLiving with a rare disease can be stressful in its own right. For example, many patients face a history of medical trauma...2 min read
Demystifying Primary Immunodeficiency TreatmentPrimary immunodeficiency (PI) is a group of more than 400 chronic disorders, including many rare diseases, in which part of the body's...3 min read
Living with a Syndrome Without a Name (SWAN)When your doctor suspects you have an illness, they may give you one or more medical tests to help them make a...2 min read
When It’s Not Laziness: Navigating Procrastination and Rare DiseaseDon't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...2 min read
Tracking Your Symptoms: How CIDP Progresses and What to ExpectIf you or someone you love has been diagnosed with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), the name alone can feel scary. But...3 min read
