Hereditary angioedema may be a rare disease that qualifies for “orphan” drug status, but we are far from alone. There are HAE organizations and treatment facilities all over the world…
In August 2015, pharmaceutical giant, Shire, made public their new deal with Sanquin, the company that manufactures CINRYZE®. CINRYZE is a drug that is indicated for the rare disease disorder,…
Domingo didn’t want to go to yet another doctor. He’d had it. They never believed him when he described his weird and extremely painful swelling episodes. When he was a…
Think about it: clinical trials are like a huge strip tease. They're waiting to put it all out there, but if no one comes, it’s a huge waste of time…
Recently, the FDA gave "breakthrough therapy" status to a potential new drug that may help prevent HAE attacks. But how does that affect you, the patient? What does "breakthrough therapy" really mean?…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
The annual HAE Awareness Day aims to raise awareness of HAE – a potentially life threatening disease – across the world, to ensure each and every patient receives faster diagnosis…
The people have spoken. The Patient-Focused Drug Development Initiative of the Food and Drug Administration (FDA) has announced the selection of diseases it will address during 2016 and 2017. Which…
No one likes shots. We are talking needle shots. And no one likes hereditary angioedema attacks. So it’s no secret that people having an HAE attack don’t want to give…
Amanda struggled for years to understand the pain and swelling that she kept experiencing. Her doctors couldn't figure out was wrong and she never knew why her throat would sometimes…
Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…
Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and…
Many people with hereditary angioedema (HAE) will tell you that really aren't sure what causes their attacks, but they can identify some common triggers such as stress, anxiety, minor trauma…
Sufferers of the rare and potentially life-threatening disease Hereditary angioedema (HAE) are raising red flags because Australia is lagging behind on diagnosing and treating the disease. HAE allows the body's…
Suffering From HAE?! Biofeedback Reporting May Save Your Life! There's a lot of buzz on BioRx, a national specialty pharmaceutical company, based in Cincinnati, Ohio. It's established a successful Biofeedback…
You can't always be prepared for an emergency- that is kind of an oxymoron. You can however think ahead and put in place an emergency plan. During a crisis, seconds really count,…
Meet the Attwood family. Out of the 8 family members present, 4 of them are living with Hereditary Angioedema. The heart of the family is led by a strong women…
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