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.

Cate shares her experience of living with myasthenia gravis, and reveals how practicing mindfulness and gratitude have greatly improved both her mental health and daily life.

Caring for someone with a rare disease can tremendously impact our daily life and well-being. Annie Harper shares her mental health journey and the importance of finding the right support.

Louisa Stringer, consultora certificada en cuidados, comparte los beneficios de llevar un diario con los cuidadores que se enfrentan a las incertidumbres de las enfermedades raras.

Read about the ways doctors diagnose Autoimmune Hemolytic Anemia (AIHA) and some common symptoms.

Respuestas a las preguntas más frecuentes sobre la AIHA

El Instituto Nacional de Investigación del Genoma Humano (NHGRI) es uno de los principales impulsores de la celebración del Día Nacional del ADN. Obtenga más información sobre su misión y sus objetivos.

The best way to understand how rare disease impacts patients and families is to listen. Dr. Susan Waisbren, a clinical psychologist, has seen this firsthand.

Discover how forward-thinking researchers are designing clinical trials to accommodate people’s lives and needs, helping with clinical study participation and the development of much-needed treatments.

We spoke with several teenagers and their parents about how they cope with different aspects of living with rare disease. Here are their best tips and advice.

En esta entrada del diario, Laura Will comparte la emotiva experiencia que supuso para ella volver a la sala de resonancia magnética donde, en 2020, la vida de su familia «nunca volvería a ser la misma».

Muchos pacientes que padecen enfermedades y trastornos raros estarán familiarizados con la fatiga. Aunque pueda parecer una molestia común, la fatiga es un síntoma debilitante que puede mermar la energía física y reducir la claridad mental y el estado de alerta.

ANGEL AID apoya a las familias con enfermedades raras y ofrece servicios de apoyo a los cuidadores a través de formación sostenible en salud y bienestar, retiros transformadores y una red global de madres que se apoyan entre sí.