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.

Rare mom Samantha Deschenes gives us an unfiltered look into life as a parent to a child with refractory seizures.

Join Know Rare in a heartfelt exploration of the profound impact of journaling on the lives of those touched by rare diseases. In the “Know Rare Connect: Journaling Your Journey” webinar.

In this recap of our first live Know Rare Connect event, we meet some incredible members of the Know Rare team and hear their stories.

Storytelling is a powerful way to process adversity and make a difference in someone else's life. 

It is important to find others who understand what you're going through.

Know Rare is thrilled to be partnering with Chris Anselmo, author of “Hello, Adversity,” as he becomes a regular contributor to our platform.

The bittersweet and unpredictable chain of events that made Donna Rae Menard a believer in the clinical trial process.

SRNA es una organización internacional sin ánimo de lucro dedicada a apoyar a niños, adolescentes y adultos que padecen diversos trastornos neuroinmunológicos raros. Descubre más sobre su labor, su comunidad y sus recursos.

Cure CMD es una organización sin ánimo de lucro cuya misión es impulsar la investigación para encontrar tratamientos para las distrofias musculares congénitas (CMD) y mejorar la vida de las personas que padecen CMD mediante la participación y el apoyo de su comunidad.

AVM Alliance es una organización benéfica sin ánimo de lucro (501(c)(3)) dedicada a atender las necesidades de la comunidad de pacientes pediátricos con malformaciones arteriovenosas cerebrales (MAV) y accidentes cerebrovasculares, ayudando a los padres de niños afectados por enfermedades de los vasos sanguíneos cerebrales y accidentes cerebrovasculares.

For many of us in the rare disease community who have no approved treatments available, clinical trials are a powerful source of hope. Read on to learn about the benefits of joining a research study and how you can take part in one.

Know Rare conducted a survey to find out how much people, who are diagnosed with myositis, know about their condition. Read on to access the results and to learn more about myositis-specific antibodies.

If you are interested in joining a research study, you may encounter some difficulties in navigating clinical trial listings. Here’s a quick guide to help you understand the terminology you might find in a clinical trial listing.

As a child, Becky Tilley often felt like she didn’t fit in or wasn’t as successful as other kids in most academic areas… except for one subject: English. Her love for reading and writing returned in her adulthood, when she started blogging about living with a rare disease called Koolen-de Vries. Learn about her newest book, Thrive Rare: Embracing the Uniqueness Within, born of her desire to spread hope.

I was twenty-six years old, a filmmaker, leading a totally normal and healthy life, until I was diagnosed with myasthenia gravis. My name is Krystel El Koussa, and this is my story.

Para quienes cuidamos de personas con enfermedades raras, las palabras que utilizamos para describirlas tienen el poder de definir sus experiencias. Descubre cómo Laura utiliza el lenguaje para empoderar a su hija y reforzar su papel como cuidadora.

Tras el diagnóstico de epilepsia de su hijo, los Anderson tuvieron dificultades para encontrar una solución de monitorización del sueño que se adaptara a sus necesidades. Decidieron tomar cartas en el asunto y crearon SAMi, un dispositivo diseñado para registrar las crisis nocturnas, así como muchos otros síntomas que se producen durante la noche. En la actualidad, la familia sigue desarrollando SAMi y aprovechando el potencial del dispositivo, que van descubriendo sobre la marcha.

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.

Alice, a rare mother from the Czech Republic, shares her story with the rare community. She talks about the diagnosis process, the hopes, and the challenges of taking care of her son Alexík, who lives with three rare diseases.