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...Living with a rare disease can be stressful in its own right. For example, many patients face a history of medical trauma...

...When my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...

...Living with hereditary angioedema (HAE) means you must be ready for a swelling attack at any time. Learning to give yourself your...

...While I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting...

...Hereditary angioedema is a rare genetic condition. It is often called HAE. People with HAE experience severe swelling in different parts of...

...Hereditary angioedema (HAE) is a rare genetic condition. It causes sudden and painful swelling in the body. For many people, life-saving infusions...

...People with hereditary angioedema (HAE) may spend years searching for answers. The road to an accurate diagnosis can be long and difficult...

...When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves...

...Living with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...

...Advocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...

...As a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely...

...Ever since I was diagnosed with the first of my three rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's...

...When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide...