One Rare Mom gets the unvarnished truth on the challenges families face when living with this complicated condition.
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Read about the ways doctors diagnose Autoimmune Hemolytic Anemia (AIHA) and some common symptoms.
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Most commonly asked questions about AIHA answered
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This article lists some of the ways that doctors treat Autoimmune Hemolytic Anemia, as well as some of the potential side effects.
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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.
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A recent study, involving children of ages 12 and older with PA or MMA, found an interesting approach in assessing individuals’ abilities to understand, think, and reason.
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Learn more about the different types of myositis, a rare autoimmune disease that can affect skin, muscles, lungs, and joints, causing muscle weakness.
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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.
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The holiday season is just around the corner, and for many, this time brings joy and connection; however, if you are navigating the diagnosis of a rare disease, the holidays can be stressful and challenging. Here are our five ways to protect your emotional health during the busy holiday season.
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If you have been diagnosed with pemphigus vulgaris, here are some lifestyle management tips you can do that can help.
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When what you see up ahead feels way too enormous and scary to manage by yourself, it can leave you feeling lonely and vulnerable. There can be a lot of trial and error involved before you finally find the one who finally hears you and tells you those words you long to hear…
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If you’re like Lynn Nezin, you’re ready to battle for your child, especially if they have to suddenly go to the hospital for something either related or not related to their rare disease. Lynn’s son, Casey, was born with Glycogen Storage Disease Type 1A, also known as Von Gierke’s Disease. Here is what Lynn has learned…
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Caring for a loved one with a rare disease can be emotionally and physically exhausting. And that’s certainly true for rare cancer caregivers. Read five pieces of advice from the leaders of TargetCancer Foundation, Jim Palma and Kristen Palma Poth.
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Receiving a cancer diagnosis is one of the most difficult experiences anyone can face. But for rare cancer patients, there’s an additional layer of unknowns, because most doctors may not have much experience with their specific disease. Kristen Palma Poth and Jim Palma, president and executive director of TargetCancer Foundation, share their best advice for newly diagnosed rare cancer patients.
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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.
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Here are 4 tips to set up your smartphone so you’re prepared for a sudden trip to the ER.
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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.
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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.
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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.
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Be ready to soothe minor emotional cuts and scrapes. These five tips can help you prepare a mental health first aid kit.
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