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 many places exist for teens and caregivers to...reactionscomments
Children and Rare Diseases: Tips for Navigating Emergency CareWhen your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the unexpected happens, which could mean a trip to...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 organized medical records, you can track changes and...reactionscomments
Terms to Know When You Have Adult-Onset Still’s DiseaseEven if you have lived with adult-onset Still's disease (AOSD) for years, new terms can come up often. Whether you are new to the AOSD world or wanting to understand...reactionscomments
The Impact of Rare Disease on SiblingsA rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the child and maintaining their health may become all-consuming...reactionscomments
How Is Adult-Onset Still’s Disease Treated?In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins cause too much inflammation. Over time, this can...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. If you have kidney failure, you will need...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 when creating a treatment plan for a rare...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 each one has unique features. Even the same...reactionscomments
Nutrition and Exercise With Pompe DiseaseRight now, there is no cure for Pompe disease. The main treatment is enzyme replacement therapy (ERT). ERT drugs help replace the protein (enzyme) that is low or missing in...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 pressure and trigger the body to make red...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 with rare kidney diseases can develop enough kidney...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. Even if you have been living with Pompe...reactionscomments
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, early diagnosis is key. The sooner you know...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 inflammation, does not work properly. In people with...reactionscomments
Nutrition and Exercise With Adult-Onset Still’s DiseaseAdult-onset Still’s disease (AOSD) is a rare type of arthritis that can cause pain and joint damage. It is often managed with medicines that work on the immune system to...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. These gene changes are called gene, or genetic...reactionscomments
What Is Power Posing?Striking a “power pose” means taking up a lot of space with your body – standing upright with great posture, legs wide, hands on hips, chin raised to the sky...reactionscomments
How Do I Know If I Have Adult-Onset Still’s Disease?Adult-onset Still’s disease (AOSD) is a rare inflammatory condition that affects mostly the joints. But it can affect many other areas of the body too. AOSD is an autoimmune condition...reactionscomments
Gene Therapy for HemophiliaFor more than 20 years, gene therapy has been evolving as a treatment option for people with hemophilia. Hemophilia is a rare genetic disease in which blood does not clot...reactionscomments
