Treating Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a long-term medical condition that impacts the liver. While PBC has no cure, treatments may help slow...reactionscomments
Complications of Primary Biliary Cholangitis: What to KnowPrimary biliary cholangitis (PBC) is a chronic condition that impacts the bile ducts in the liver. Although PBC primarily affects the liver...reactionscomments
The Diagnostic Maze: Why Was I Misdiagnosed?Finding the cause of your rare disease can feel like a long journey. Many people with hereditary angioedema (HAE) spend years looking...reactionscomments
HAE and the Estrogen Connection: A Guide to Hormonal TriggersHereditary angioedema (HAE) is a rare disease that causes painful and sudden swelling in the body. Many factors can lead to these...reactionscomments
Questions to Ask Your Doctor When You Have Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a lifelong condition. If you are facing a PBC diagnosis or have been living with PBC, you...reactionscomments
Understanding Primary Biliary CholangitisPrimary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also...reactionscomments
How is hATTR-PN Diagnosed?Many people who have hereditary transthyretin amyloid polyneuropathy (hATTR-PN) go through a long and difficult journey before they get a correct diagnosis...reactionscomments
Understanding Hereditary Transthyretin Amyloid Polyneuropathy (hATTR-PN)Learning that you or a loved one has a rare condition can feel overwhelming. Many people with transthyretin amyloid polyneuropathy (ATTR-PN) spend...reactionscomments
Signs and Symptoms of hATTR-PNLiving with unexplained health changes can feel like trying to solve a puzzle with missing pieces. Many people with hereditary transthyretin amyloidosis...reactionscomments
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
Keeping Your Medical Records OrganizedKeeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With...reactionscomments
Understanding and Managing the Non-Pancreatitis Symptoms of Familial Chylomicronemia SyndromeWhen people talk about familial chylomicronemia syndrome (FCS), they often focus on acute pancreatitis. This severe abdominal pain is a serious and...reactionscomments
What Is Familial Chylomicronemia Syndrome (FCS)?Familial chylomicronemia syndrome, or FCS, is a metabolic disorder. This means it is a problem with how the body processes substances to...reactionscomments
How to Start Your Own Advocacy GroupAdvocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...reactions1comment
Taking Control of Your PI Treatment at HomeLiving with primary immunodeficiency (PI) can feel like a life managed by the schedule of your infusions. For years, intravenous immunoglobulin (IVIG)...reactionscomments
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...reactionscomments
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...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
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...reactionscomments
Pompe Disease and GeneticsPompe disease is a genetic condition. People with Pompe disease have changes in specific genes that impact how they break down sugar...reactionscomments
