According to a story from globnewswire.com, the gene therapy company Adverum Biotechnologies recently announced that the US Food and Drug Administration (FDA) has granted them Orphan Drug designation for their…
According to a story from Pharma Times, four new medications were recently approved for coverage on the Scottish NHS by the Scottish Medicines Consortium (SMC). Some of these drugs are…
According to a story from Benzinga, the pharmaceutical company BioCryst Pharmaceuticals, Inc., recently announced that its investigational product BCX7353 has been granted Fast Track Designation from the FDA for the…
As I’ve gotten older, I realize I’ve become more introspective, analyzing my relationships, emotions, spiritual well being, and mental health. While talking to others with rare diseases I’ve learned it…
The information in this article is based on the HAE UK and the US Hereditary Angioedema Association websites. Hereditary angioedema (HAE) is a condition that affects about one in every…
Researchers have carried out a study into the genetic mechanisms involved in hereditary angioedema acute attacks. They found that two genes, called uPAR and ADM, had a particularly strong influence.…
It may not be surprising news to find that the United States now pays more for prescription drugs than any other high-income country. This was not always the case however. Read…
According to a story from Rare Disease Report, a recent study indicates that the self-administration of Berinert, a drug used to treat hereditary angioedema, is effective and safe for patients…
Hereditary Angioedema, or HAE, is an extremely rare genetic condition. Patients with HAE experience swelling under the skin in possibly many different parts of the body. Individuals with HAE do…
A new therapy option for hereditary angioedema (HAE) has recently received FDA approval! Marketed as Haegarda by biopharmaceutical company, CSL Behring, this subcutaneous C1 Esterase Inhibitor is now usable in…
Ah, the seventh-grade science fair, I remember it well. Not being an overly imaginative student, I came home and announced I was going to make an exploding volcano for my…
Attention hereditary angioedema patients: preventative treatment is on the horizon! Shire plc is one of the global leaders in rare disease research and pharmacology, and the group recently released positive…
Want some more news, events and announcements on HAE? We got 'em! [one_half] [/one_half] [one_half_last] Get the Most Updated HAE Treatment Information Treatments Are Available: What Now? New,…
One of my biggest struggles used to be living without a diagnosis and trying to figure out what to say to people. What was I supposed to say when I…
About 1 in 10,000 people are affected by hereditary angioedema (HAE)--and most don't have a clue that the condition even exists. HAE can be fatal, if not treated. Almost every family…
Lynn Holman believes that her pregnancy may be the reason she got diagnosed with hereditary angioedema (HAE). At first, Lynn thought she had a bad allergic reaction one morning because…
Hereditary angioedema (HAE) has long been misunderstood. Many patients go for years without a proper diagnosis because the medical community knows very little about this rare condition. Part of my job…
Now that the brutal and bruising 2016 Presidential Election is behind us and we’ve waded into the Trump era, maybe we can finally move past some of the most divisive…
Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible…
Jake Conaway aprendió lo peligroso puede ser el angioedema hereditario (AEH) cuando tenía sólo siete años de edad. Fue entonces cuando su padre murió a causa de la condición genética…
Click here to read Part 1 of Theresa's HAE Diagnosis. A couple of months later I flew back to Nebraska, got sick on the plane with an abdominal attack at…
When I was 20 years old, my new husband and I celebrated our marriage with family and friends, with a luncheon where there was no alcohol. Neither of us drank…
Last summer, I was sitting on my deck, reading the NY Daily News (don't judge me; I've been reading it since I was six years old), and I came upon…
I don’t know what it is about hereditary angioedema (HAE) that makes people with it have a really great sense of humor, but they do. Maybe it’s the absurdity of…
Al igual que muchos con angioedema hereditario, esta familia no sabía que la enfermedad estaba afectando a varios de sus miembros hasta que uno de los miembros, Ken, fue diagnosticado…
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