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.

When it comes to complex, rare diseases, most people don’t think “dermatology.” But they should, says Prince Adotama, MD, a board-certified dermatologist and faculty member at NYU. Dr. Adotama specializes in skin of color care and skin autoimmune disorders, including rare bullous disorders.

This article lists some of the ways that doctors treat Autoimmune Hemolytic Anemia, as well as some of the potential side effects.

My name is Lindsay Alpert and I am thirty-one years old. This is my journey and path to my diagnosis of a rare chronic autoimmune neuromuscular disorder, Myasthenia Gravis.

Aside from celebrating Rare Disease Day, February also marks Black History Month, a time dedicated to honoring the inspiring accomplishments and sacrifices of African Americans throughout US history. We take this opportunity to highlight three influential Black Women, who have made extraordinary contributions to the health sciences.

La Fundación Cure Mito es una fundación gestionada por voluntarios dedicada a promover la educación y la investigación sobre el síndrome de Leigh y las enfermedades mitocondriales.

A recent study, involving children of ages 12 and older with PA or MMA, found an interesting approach in assessing individuals’ abilities to understand, think, and reason.

Al desear a nuestra comunidad de enfermedades raras un feliz Día de las Enfermedades Raras, descubre el empoderamiento y la singularidad que se esconden tras la palabra «raro», lo que lleva a Laura a definirse sin dudarlo como una «mamá rara».

MG is a chronic condition with symptoms that come and go. It can be severe, but it’s also a treatable condition. Here are 10 key insights for MG patients and their support networks.