All about Congenital Myasthenic Syndromes at a glance
Read More
Read about the ways doctors diagnose Autoimmune Hemolytic Anemia (AIHA) and some common symptoms.
Read More
Most commonly asked questions about AIHA answered
Read More
This article lists some of the ways that doctors treat Autoimmune Hemolytic Anemia, as well as some of the potential side effects.
Read More
Aside from celebrating Rare Disease Day, February also marks Black History Month, a time dedicated to honoring the inspiring accomplishments and sacrifices of African Americans throughout US history. We take this opportunity to highlight three influential Black Women, who have made extraordinary contributions to the health sciences.
Read More
Learn more about the different types of myositis, a rare autoimmune disease that can affect skin, muscles, lungs, and joints, causing muscle weakness.
Read More
Intravenous Immunoglobin, or IVIg, is a common procedure for a variety of autoimmune disorders, immune deficiencies, and inflammatory conditions. Learn about what the procedure accomplishes, how it’s administered, its side effects, and other useful information below.
Read More
At Know Rare, we believe sharing our questions, experiences, and collective wisdom can help us all in navigating an uncertain course with our rare disease. For medical questions, it is always important to consult your doctor or specialists; however, sometimes it can help to have information to share with them. This is the first of a series of questions we received and the research we’ve found on the topic.
Read More
Symptoms of myasthenia gravis (MG) often fluctuate. There may be times when you have only minor symptoms or no symptoms at all.
Read More
How should parents of children experiencing meltdowns deal with clueless and judgmental onlookers? What are the best methods to alleviate motion sickness when your child might already be on a cocktail of drugs? Traveling Different answers these and many other questions parents may have when traveling with their children.
Read More
This episode of the DNA Today podcast discusses how propionic and methylmalonic acidemia affect the body, the goal of HemoShear’s investigation therapy (HST5040) that is currently in development, mindfulness and coping with a diagnosis, and why the FDA tends to fast-track therapies that target orphan/rare diseases.
Read More
The immune system of the skin is sensitive to the environment. Sunlight and air temperature normally affect the skin, but, if you have Bullous Pemphigoid (BP), which is an autoimmune disease, getting sun or too much heat can lead to blistering.
Read More
Bullous pemphigoid (BP) is a rare skin condition that causes large, fluid-filled blisters. In reviewing evidence of food-related triggers, find out which foods may trigger BP.
Read More
Patient-reported outcome measures (PROMs) provide a missing link. They help healthcare providers understand the impact of living with a disease on terms that matter to you.
Read More
This episode of the DNA Today podcast discusses the function of the mitochondria, challenges of living with a mitochondrial condition, how primary mitochondrial myopathies (PMM) are unique, how the percentage of affected mitochondria correlates with the severity of symptoms, what Reneo doing to help diagnose more patients with PMM, and Reneo’s STRIDE study for treatment of PMM
Learn about Mind-Body Interventions (MBI) and how they can help with FSGS symptoms.
Read More
Discover the benefits of yoga and how it can help with FSGS symptoms, and find out how to get started with a yoga practice.
Read More
How can we advance knowledge research for a rare disease when there are so few patients? One important way is through a patient registry. Learn more about what a patient registry is and why should people with a rare disease join one.
Read More
The National Alliance for Caregiving (NAC), in partnership with Global Genes, has released a new handbook that offers support, advice, and guidance for unique challenges and unique rewards of caring for a child with a rare or serious disease.
Read More
After Laura Will’s son was diagnosed with a rare condition, she felt unsure how to talk to her kids about the diagnosis and corresponding disability. She’s found that children’s books have been a wonderful way to safely initiate conversations with her children about the difficult topics that exist within the world of rare disease. In this article she shares her list of book recommendations with the Know Rare community.
Read More