After their son’s diagnosis of Epilepsy, the Anderson’s struggled to find a sleep-monitoring solution that worked for them. They decided to take matters into their own hands and created SAMi, a device designed to track nocturnal seizures as well as many other nighttime symptoms. Now, the family continues to develop SAMi, and unlock potential in the device that they are uncovering as they go.

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, a certified caregiving consultant, shares the benefits of journaling for caregivers facing the uncertainties of rare disease.

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

Most commonly asked questions about AIHA answered

The National Human Genome Research Institute (NHGRI) is a leader in the celebration of National DNA Day. Learn more about their mission and purpose.

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.

In this journal entry, Laura Will shares her emotional experience in returning to the MRI suite where, in 2020, her family’s life ‘would never be the same.’

Many patients managing rare diseases and conditions will be familiar with fatigue. Though it might seem like a common annoyance, fatigue is a debilitating symptom that can sap physical energy and reduce mental clarity and alertness.

ANGEL AID supports rare families and offers relief services to caregivers through sustainable health and wellness training, transformative retreats, and a globally connective mother-to-mother network.

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.

The Cure Mito Foundation is a volunteer-run foundation dedicated to advancing education and research for Leigh syndrome and mitochondrial disease.