Transitioning to Adult Care With Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from...reactionscomments
Understanding Congenital Adrenal HyperplasiaCongenital adrenal hyperplasia (CAH) is a group of rare genetic disorders that affect the adrenal glands. The adrenal glands are 2 walnut-sized...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
Dialysis and Kidney DiseaseDialysis is a type of treatment for people who have kidney failure, also known as end-stage kidney disease (ESKD). Over time, people...reactionscomments
What Is Adult-Onset Still’s Disease?Adult-onset Still’s disease (AOSD) is a rare type of autoinflammatory arthritis. An autoinflammatory condition occurs when the body’s immune system, which creates...reactionscomments
Transitioning From Pediatric to Adult Care With a Rare DiseaseYoung people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not...reactionscomments
Community Spotlight: Rare CancersRare cancers affect fewer than 40,000 people per year in the United States. These cancers make up about a quarter of all...reactionscomments
What to Know About Rare Motor Neuron DiseasesMotor neuron diseases (MNDs) are a class of diseases that affect certain important cells. These cells, called motor neurons, control the muscles...reactionscomments
What Are Rare Kidney Diseases?In the United States, a kidney disease is considered rare if it affects fewer than 200,000 people. There are more than 150...reactions5comments
How Are Rare Kidney Diseases Diagnosed?Many rare kidney diseases cause long-term damage. This damage can cause the kidneys to work less and less well over time. So...reactionscomments
What Type of Doctors Treat Rare Kidney Diseases?The kidneys filter extra water and waste out of the blood and make urine. They also make hormones that help control blood...reactionscomments
What to Know About Newborn Screening and Rare DiseasesNewborn screening (NBS) is a program in the United States that tests all babies for certain treatable medical conditions. Early detection and...reactionscomments
Questions to Ask Your Doctor About Pompe DiseaseWhether it is you or a loved one who is diagnosed with Pompe disease, you likely have many questions about the condition...reactionscomments
How Is X-linked Hypophosphatemia Treated?X-linked hypophosphatemia (XLH) is a life-long condition in which the body does not process the nutrient phosphorus properly. Because phosphorus is necessary...reactionscomments
Caring for a Child With X-linked HypophosphatemiaX-linked hypophosphatemia (XLH) is a genetic disorder that affects how the body processes phosphorus (phosphate). Phosphorus is an essential mineral for healthy...reactionscomments
What Is X-linked Hypophosphatemia?X-linked hypophosphatemia (XLH) is a rare disorder that causes low phosphorus levels. This happens because people with this condition pass the mineral...reactionscomments
Genetics 101Our genes are like a recipe book for our bodies. They tell our cells what to do, how to grow, and how...reactionscomments
Community Members Share Their MAC Lung Disease ExperiencesNavigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise. It...reactionscomments
How Is X-linked Hypophosphatemia Diagnosed?X-linked hypophosphatemia (XLH) is a chronic, progressive disease, so early diagnosis is important to stop symptoms from getting worse. XLH is diagnosed...reactionscomments
Preparing for End-Stage Kidney DiseaseEnd-stage kidney disease (ESKD) is when your kidneys are barely working or have stopped working. This condition is also called kidney failure...reactionscomments
