If you’ve been told you have seronegative NMOSD, there’s nearly 50/50 chance you have a different antibody causing your symptoms –MOG antibody.

At the annual Kidney Week of the American Society of Nephrologists (ASN), the world’s largest kidney healthcare professional organization, new advances in research were highlighted. Over $35 million has been invested in research with the ASN, and there are many treatments in development for IgA Nephropathy (IgAN), with researchers actively investigating more than 20 different drugs.

Retinopathy is an eye problem that many people with Danon disease have. It can cause dark spots in the outer part of the eye, blurry or worse vision, and unusual test results on an eye exam. Sometimes these eye changes show up before heart problems, so an eye check can help find the disease early.

Fatigue is a very common and often debilitating symptom of IgAN. It is linked to disease progression and reduced kidney function, but other factors like inflammation, anemia, and mental health also play a role. In a 2025 study, the majority of patients with IgAN reported fatigue, and patients with more severe proteinuria and lower kidney filtration rates (eGFR) experienced worse fatigue. 

Discover how ITP patients and physicians differ in their views on fatigue—and how journaling and goal-setting tools can help reduce fatigue and improve overall quality of life.

Discover how genetics and family history influence IgA Nephropathy (IgAN) risk and development, especially in Asian populations.

Discover the latest treatments for IgA Nephropathy (IgAN), a rare kidney disease. Learn how current medications and emerging therapies work to slow progression, reduce proteinuria, and protect kidney function.

Recognizing the need for an effective way to treat becker muscular dystrophy, researchers have been studying the cause of muscle loss, and ways to stop it from happening.

Find out about 7 research areas identified as priorities in Sickle Cell Research and about a sickle cell disease drug, which was originally approved for treatment, that has been taken off the market.

There are over 50 million people in the United States that live with chronic pain. However, researchers studying pain have learned something important: perception of pain is personal, and may have more to do with other factors than just the physical cause of the pain.

Why Men’s Health Week (June 10-16) matters for the Rare Community, and how you can take part.

This summer, NMOSD and MOGAD patients, caregivers, clinicians, nurses, researchers, and advocates are invited to join The Sumaira Foundation at Emory for TSF's Atlanta Patient Day.

This May, Know Rare is shining a light on myositis, a group of rare autoimmune muscle diseases that can have profound effects on daily life. This is an important time for the myositis community and the rare disease community at large: a time to share stories from those living with the condition, share more information about the current state and future of the disease, and advocate for better treatments that will ultimately enhance the quality of life for those impacted by it. Whether you're a patient, caregiver, or advocate, join us in raising awareness and supporting those affected by myositis.

Recent headlines in research and advocacy show promising news for the treatment of rare diseases.

The National Tay-Sachs & Allied Diseases Association (NTSAD), leader in the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1 and Sandhoff diseases, is hosting the first-ever, ExternallyLed Patient-Focused Drug Development Meeting for GM2 gangliosidoses (Tay-Sachs and Sandhoff diseases) on Thursday, February 15, 2024.

Edgewise’s investigational drug is a pioneering treatment for Duchenne and Becker muscular dystrophies.

Know Rare's Medical Advisor, led the Mass General for Children’s Storybook Ball, raising $1.9 million for innovative healthcare and research, while sharing her own personal rare disease journey, and highlighting Know Rare's mission to connect and empower individuals living with rare conditions.

A new treatment for myasthenia gravis, a rare neuromuscular condition, has been approved by the FDA thanks in part to the success of a clinical trial that Know Rare helped to recruit patients for.

In a 2021 report, authors Ahmad Saud, R Naveen, Rohit Aggarwal & Latika Gupta, all well-known experts in myositis, discuss recent findings about the relationship between COVID-19 and myositis.