Inclusivity and Rare Diseases: 6 Things for Friends and Family to Consider...Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not...reactions1comment
What Is ANCA-Associated Vasculitis?...ANCA-associated vasculitis is a group of rare autoimmune diseases. In these conditions, the immune system attacks the body's own small blood vessels...reactionscomments
Tracking Your Symptoms: How CIDP Progresses and What to Expect...If you or someone you love has been diagnosed with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), the name alone can feel scary. But...reactionscomments
Your Guide to the CIDP Diagnosis Journey...If you have chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), you may have spent weeks or months searching for answers. Maybe your hands and...reactionscomments
Understanding Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP): The Basics...Getting a diagnosis with a name as long as "chronic inflammatory demyelinating polyradiculoneuropathy" can feel scary. It is normal to feel worried...reactionscomments
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...reactionscomments
How to Navigate Online Doctor Ratings...Editor’s Note: This article was originally written by Elizabeth Medeiros and shared by our partner site Psoriatic-Arthritis.com. The internet has changed how...reactions2comments
Signs and Symptoms of Rare Kidney Diseases...Rare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and...reactionscomments
Treating Rare Kidney Diseases...Many rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider...reactionscomments
Where's Your Line? Navigating Repeated IV Attempts with a Rare Disease...My experience with a rare disease, which was the same for my mother too, is that our health is complicated, and so...reactions4comments
What to Expect: Your Guide to MAC Lung Disease Treatment...Being diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex...reactions2comments
Why a Rare Disease Diagnosis Matters Beyond Treatment...Recently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...reactionscomments
Rare Sibling Advocacy: 7 Ways to Make an Impact...In the delicate balance of raising siblings, the journey can take unexpected turns when one child is navigating the challenges of a...reactions2comments
Community Views: Navigating the ER as a Rare Disease Warrior...Living with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...reactions8comments
Understanding Mental Health and Mental Health Resources...Living with a chronic illness is about more than just physical symptoms. It also impacts how you think, feel, and act. For...
Health Resources...Living with a chronic health condition can be challenging, frustrating, and tiring. You might feel like your life is on hold. Frequent...
5 Tips for Coping with Stress and Chronic Illness...Living with a rare disease can be stressful in its own right. For example, many patients face a history of medical trauma...reactionscomments
Our Journey with Kleefstra Syndrome...Have you ever wondered why you are on this earth? I know exactly why I’m here. In 1977, my husband, Tony, and...reactions1comment
Why Joining Your Rare Disease Community Is Important...When my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...reactionscomments
