June is Pride Month, and at Know Rare, we are committed to celebrating the rich diversity within the rare disease community.

Journalist Lindsay Guentzel describes navigating a diagnostic odyssey and how she manages day-to-day life with myositis in an impactful webinar.

When you live with a rare disease, the joyful experiences risks can bring are all the more valuable.

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.

Why clinical trials are so important for the rare disease community.

How physical activity impacts this rare condition—and why you need to know about it.

Know Rare writer Gina DeMillo Wagner’s new memoir, Forces of Nature explores powerful themes related to caregiving and rare disease.

Journalist Lindsay Guentzel offers an inside look at life with the rare muscular condition.

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.

Author Chris Anselmo explains why being mindful of your pace can have major benefits for your health and well-being, and offers some tips to help.

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

La Fundación Internacional para la Macroglobulinemia de Waldenström (IWMF) es una organización internacional sin ánimo de lucro fundada e impulsada por pacientes, con una visión y una misión sencillas pero convincentes: lograr un mundo sin WM (macroglobulinemia de Waldenström) y apoyar e informar a todas las personas afectadas por esta enfermedad, al tiempo que se impulsa la búsqueda de una cura.

Many people living with rare disease describe life in terms of before and after: Before a diagnosis, they experience frustration, confusion, and exhaustion as they see various doctors and try to make sense of their symptoms. After a diagnosis, they may experience waves of relief mixed with a determination to find treatments – and often, grief about the impacts of the disease on their lives. No one understands how it feels to step across that invisible before-and-after line better than Julia Lefelar, Executive Director and Co-founder of the MOG Project.

El Proyecto MOG se dedica a dar a conocer la enfermedad por anticuerpos anti-MOG (MOGAD), así como a formar a médicos, pacientes y cuidadores, y a impulsar la investigación mediante la colaboración con expertos y la recaudación de fondos para nuestro programa «Investigación sobre enfermedades raras ».

All about Congenital Myasthenic Syndromes at a glance

Get essential information about congenital myasthenic syndromes (CMS) and why clinical trials are a crucial element in the path towards better treatment for the condition.

Get the basics on needle anxiety, one of the top medical fears among children, and discover tips to manage it.

On World Oral Health Day (March 20), we’re taking a closer look at what your oral health can tell you about your well-being.

Author Erin Paterson talks about Huntington’s Disease, family planning, and the healing power of sharing your story.

Breaking down the differences between observational studies and clinical studies for drug research.