This Mile High Club for Patients is Not What You Think
Virginia Beach resident, Tina, has a motto: "I'm more than a conqueror!" Her medical journey began in 1993 when she started to experience the swelling of various parts of her body.…
Virginia Beach resident, Tina, has a motto: "I'm more than a conqueror!" Her medical journey began in 1993 when she started to experience the swelling of various parts of her body.…
Star light, star bright, first star I see tonight? Forget it--Shire's growing something a little more down to Earth. As part of their Me, Not HAE campaign, Shire's new site…
When browsing through Tumblr or scrolling past tweets have you ever found yourself asking, "What is a spoonie?" It's time to find out. First of all, a spoonie is a…
Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill We…
A nadie le gustan las vacunas A nadie le gustan los ataques de angioedema hereditario. No es ningún secreto que las personas que están sufriendo un ataque de AEH no…
La iniciativa llamado el Patient-Focused Drug Development Initiative de la Administración Nacional de Alimentos y Fármacos (FDA por sus siglas en Ingles) ha anunciado la lista de enfermedades a las…
Here's the scenario: a woman and a man walk into the emergency room with the same symptoms. Both have terrible pain in their abdominal region. The man is immediately brought…
Jake Conaway learned how dangerous hereditary angioedema (HAE) can be when he was just seven years old. That’s when his father died because of the rare genetic condition, which occurs in about…
We are kicking off #NERVEmber! We are very excited to be a part of this campaign to shed some light on chronic illnesses like CRPS/RDS that can greatly effect the…
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…
It's flipping Halloween week! While some of these stories will give you the good feels, we have one for you that will give you the heebie jeebies. Check out these…
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…
Yes, the weekend of October 9, saw the Hereditary Angioedema Association (HAEA) a mile high and happy--but not the way you're thinking! What's wrong with you? The HAEA hosted the…
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,…
Amanda lucho durante muchos años para comprender cuál era la razón detrás de las hinchazones y el dolor que experimentaba frecuentemente. Sus doctores no sabían que le pasaba y ella…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] 5 Reasons Why Sticking Yourself With a Needle Will Make You Smile Everyone hates needles,…
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…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] This Mom Will Make You Want to Hug Every Teacher A teacher who already has…
Like many with hereditary angioedema, this family didn’t know the disease was affecting several of its members until one member, Ken, was diagnosed at 25 The Telegram reports. From there,…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Move Over Barbie. This is the Model Little Girls Should Idolize In this interview ankylosing…
Hereditary angioedema, or HAE, is a life-threatening rare genetic disease with a lot of still-unanswered questions. However, scientists at the Karolinska Institute in Sweden, Science Daily reports, may have answered…