Si te han dicho que padeces NMOSD seronegativa, hay casi un 50 % de probabilidades de que sea otro anticuerpo el que provoque tus síntomas: el anticuerpo MOG.

En la edición anual de la «Kidney Week» de la Sociedad Americana de Nefrólogos (ASN), la mayor organización mundial de profesionales sanitarios especializados en nefrología, se presentaron los últimos avances en investigación. Se han invertido más de 35 millones de dólares en investigación con la ASN, y hay numerosos tratamientos en fase de desarrollo para la nefropatía por IgA (IgAN), con investigadores que estudian activamente más de 20 fármacos diferentes.

La retinopatía es un problema ocular que padecen muchas personas con la enfermedad de Danon. Puede provocar manchas oscuras en la parte exterior del ojo, visión borrosa o empeoramiento de la visión, y resultados anormales en un examen oftalmológico. A veces, estos cambios oculares aparecen antes que los problemas cardíacos, por lo que un examen oftalmológico puede ayudar a detectar la enfermedad en una fase temprana.

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.

Conscientes de la necesidad de encontrar un tratamiento eficaz para la distrofia muscular de Becker, los investigadores han estado estudiando las causas de la pérdida muscular y las formas de evitarla.

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.

La FDA ha aprobado un nuevo tratamiento para la miastenia gravis, una enfermedad neuromuscular poco frecuente, gracias en parte al éxito de un ensayo clínico en el que Know Rare colaboró en la selección de pacientes.

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.