All about Congenital Myasthenic Syndromes at a glance

Most commonly asked questions about AIHA answered

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.

Learn more about the different types of myositis, a rare autoimmune disease that can affect skin, muscles, lungs, and joints, causing muscle weakness.

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.

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.

Symptoms of myasthenia gravis (MG) often fluctuate. There may be times when you have only minor symptoms or no symptoms at all.

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.

Learn about Mind-Body Interventions (MBI) and how they can help with FSGS symptoms.

Discover the benefits of yoga and how it can help with FSGS symptoms, and find out how to get started with a yoga practice.

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.

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.

Prader-Willi syndrome (PWS) is a genetic condition that affects growth and development. In this article, genetic counselor Elizabeth Kearney answers common questions for individuals with Prader-Willi Syndrome and their caregivers.

This curated collection by a mom to a child with rare disease can serve as both strength and guidance while navigating rare disease and its tribulations.

Coping with rare genetic disease is a journey. Along the way, questions may arise about inheritance and genetic testing. Genetic counselors are specially trained healthcare professionals who can provide personalized advice and support.

Rare patients can run into trouble accessing treatments for any of a number of reasons. Perhaps the medication your doctor would like to try is not yet FDA-approved for your condition. There might be a clinical trial you want to take part in, but you do not meet the eligibility requirements for that trial. Or maybe your health insurer is reluctant to pay for a newly available medication. Whatever the reason, there are programs that may offer hope.

Adaptive clothing is clothing created to solve problems. Makers of adaptive clothing specialize in apparel, footwear, and accessories designed to make life easier for those with mobility issues and other special health needs. All aim to improve comfort and accessibility, promote independence and dignity, and make wearers look good and feel good.

Myasthenia Gravis (MG) is an autoimmune disease in which the immune system produces antibodies that interfere with normal cell function, instead of attacking invaders like bacteria and viruses.

Plasmapheresis is a procedure used to filter out antibodies that are mistakenly attacking the body’s own tissues. Here’s what to know about the ins and outs of the procedure.