Learn more about the different types of myositis, a rare autoimmune disease that can affect skin, muscles, lungs, and joints, causing muscle weakness.

Intravenous Immunoglobin, or IVIg, is a common procedure for a variety of autoimmune disorders, immune deficiencies, and inflammatory conditions. Learn about what the procedure accomplishes, how it’s administered, its side effects, and other useful information below.

Laura shares her story of living with MS and ITP, a rare disease that affects the number of platelets in the blood. Learn more about her perspective on life, her day-to-day activities, and her experience in joining a clinical study.

Joan shares her experience of living with ITP, a rare disease that affects the number of platelets in the blood. Learn more about her worries and the useful advice that she offers to the Know Rare community.

At Know Rare, we believe sharing our questions, experiences, and collective wisdom can help us all in navigating an uncertain course with our rare disease. For medical questions, it is always important to consult your doctor or specialists; however, sometimes it can help to have information to share with them. This is the first of a series of questions we received and the research we’ve found on the topic.

Symptoms of myasthenia gravis (MG) often fluctuate. There may be times when you have only minor symptoms or no symptoms at all.

At times, managing a rare condition can feel like an isolating reality. We’ve rounded up notable names who break with that status quo, bringing rare conditions—and the stories behind them—into the spotlight.

The holiday season is just around the corner, and for many, this time brings joy and connection; however, if you are navigating the diagnosis of a rare disease, the holidays can be stressful and challenging. Here are our five ways to protect your emotional health during the busy holiday season.

הנה הרהורה נדירה של אם על סקרנותה התמימה של ילדה הבריא ועל השאלות בנוגע לנכות שעליה ללמוד לענות עליהן.

For over 25 years, the United Mitochondrial Disease Foundation (UMDF) has worked to promote research and education for the diagnosis, treatment and cure of mitochondrial disorder while supporting affected individuals and families.

For parents and other family members of children with disabilities, nothing is more comforting than the voice and wisdom of someone who’s been there—someone who truly understands the ups and downs of living alongside someone with a rare disease or rare disorder. That’s why Theresa Bartolotta decided to offer a podcast.

Jessica Duis, MD is more than a pediatric geneticist. She’s a partner and friend to children and adults who have Angelman, dup15q, and other related syndromes. Throughout her career, she has noticed a need for patients and their families to find community and support within the walls of the hospitals and clinics where they spend so much time.

If you have been diagnosed with pemphigus vulgaris, here are some lifestyle management tips you can do that can help.

אני זוכרת את כיתת הלימוד שטופת השמש, בעלת הקירות הלבנים, באפר ווסט סייד של ניו יורק, שם שמעתי לראשונה את המונח הרפואי "כישלון לשגשג". הייתי סטודנטית, שלמדה לתואר שני בסיעוד, וסקרתי קריטריונים לאבחון של מגוון מצבים במערכת העיכול...

When what you see up ahead feels way too enormous and scary to manage by yourself, it can leave you feeling lonely and vulnerable. There can be a lot of trial and error involved before you finally find the one who finally hears you and tells you those words you long to hear…

Learning that your child has a rare genetic disorder is a profound moment for any parent. But imagine finding out for the first time that you have the same disorder too. That was the scenario Becky Tilley faced the day she learned that she, her infant son, and her then-unborn baby all have Koolen-de Vries Syndrome.

If you’re like Lynn Nezin, you’re ready to battle for your child, especially if they have to suddenly go to the hospital for something either related or not related to their rare disease. Lynn’s son, Casey, was born with Glycogen Storage Disease Type 1A, also known as Von Gierke’s Disease. Here is what Lynn has learned…

When it comes to finding answers about rare disease, nothing is more powerful than a parent’s determination and perseverance. That’s exactly how the Familial Dysautonomia (FD) Foundation came to be in 1951.

קראו נקודת מבט אישית של אם המגדלת ילדים צעירים בריאים וגם ילדים עם בעיות רפואיות מורכבות. למדו על ההשפעה שיכולה להיות לאחות עם בעיות רפואיות מורכבות על הדינמיקה המשפחתית, וקבלו גישה למשאבים שיכולים לתמוך בילד הבריא בחקר רגשותיו.

Caring for a loved one with a rare disease can be emotionally and physically exhausting. And that’s certainly true for rare cancer caregivers. Read five pieces of advice from the leaders of TargetCancer Foundation, Jim Palma and Kristen Palma Poth.