Journey to Chronic Rare Disease TreatmentLiving with a rare disease is difficult. Getting access to treatment for rare diseases can be inaccessible for many. Many rare disease medications are expensive and subject to price gouging...
What is a SWAN?When your doctor suspects you have an illness, they may give you one or more medical tests to help them make a diagnosis. But what happens when the results fail...
The Diagnosis Journey: Primary Immunodeficiency (PI)A long and difficult road may face people with primary immunodeficiency, also known as PI. It is not always easy to diagnose someone with PI. This article will help you...
Staying Informed on Your Rare Disease for Better AdvocacyEver since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's been important to me because, as with most...
Rare Diseases and Preparing for an EmergencyMedical emergencies are certainly no fun, especially when a rare disease is in the mix. However, being prepared for a potential emergency can make the nightmare of a situation slightly...
The Power of a Name: Why a Rare Disease Diagnosis MattersRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for several years now. Although she had been to...
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 immune system is missing or does not function...
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 to protect you, does not work as it...
Thriving with a Rare Disease: 5 Personal Strategies for Stress ReductionLiving with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through the trash compactor that the U.S. calls a...
Understanding Primary Immunodeficiency (PI)Primary immunodeficiency, or PI, is a group of chronic disorders, including many rare diseases. These diseases are caused by problems in the immune system that are present at birth, although...
