Community Views: We Are Rare, But Not AloneRare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress...reactions6comments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to ConsiderSocial 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 ExpectIf 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 JourneyIf 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 BasicsGetting 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 RatingsEditor’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 DiseasesRare 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 DiseasesMany 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 DiseaseMy 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 TreatmentBeing diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex...reactionscomments
Why a Rare Disease Diagnosis Matters Beyond TreatmentRecently, 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 ImpactIn 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 WarriorLiving with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...reactions8comments
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...reactionscomments
Why Joining Your Rare Disease Community Is ImportantWhen my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...reactionscomments
Mastering the Infusion: A Guide to Self-Administration and Port CareLiving with hereditary angioedema (HAE) means you must be ready for a swelling attack at any time. Learning to give yourself your...reactionscomments
Setting Boundaries: What Self-care Looks LikeWhile I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting...reactions3comments
The Future of HAE Care: Understanding Gene EditingHereditary angioedema is a rare genetic condition. It is often called HAE. People with HAE experience severe swelling in different parts of...reactionscomments
