Understanding Hereditary Angioedema (HAE)People with hereditary angioedema (HAE) may spend years searching for answers. The road to an accurate diagnosis can be long and difficult...3 min read
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...3 min read
Common Tests and Tools for Diagnosing a Rare DiseaseAn incorrect or delayed diagnosis of a rare disease is common. Because so few people have a particular rare condition, the doctors...4 min read
I’ve Learned Self-care. What About Self-love?When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves...3 min read
Why Joining Your Rare Disease Community Is ImportantWhen my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...2 min read
Mastering the Infusion: A Guide to Self-Administration and Port CareLiving with hereditary angioedema (HAE) means you must be ready for a swelling attack at any time. Learning to give yourself your...3 min read
