Crafting Hope: How Art Helps Me Navigate Rare DiseaseLiving with a rare disease can be exhausting and monotonous. The uncertainty of living with a chronic condition can cast a shadow...2 min read
How Is Hereditary Angioedema Treated?Hereditary angioedema (HAE) is a rare disorder in which a person has recurring, severe swelling. This swelling takes place in the arms,...3 min read
How Clinical Trials Are Transforming the Future for Rare Disease WarriorsPrior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical...4 min read
Role of Genetics in Rare DiseasesRoughly 7,000 rare diseases have been identified so far. Of those, 8 out of 10 have a genetic cause. Understanding the root...3 min read
The Power of Your Voice: Sharing All Symptoms with All SpecialistsTime and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates –...2 min read
The Diagnostic Maze: Why Was I Misdiagnosed?Finding the cause of your rare disease can feel like a long journey. Many people with hereditary angioedema (HAE) spend years looking...3 min read
HAE and the Estrogen Connection: A Guide to Hormonal TriggersHereditary angioedema (HAE) is a rare disease that causes painful and sudden swelling in the body. Many factors can lead to these...3 min read
