El angioedema hereditario, o AEH, es una rara enfermedad genética que es potencialmente mortal con un muchas preguntas sin respuesta aún. Sin embargo, los científicos del Instituto Karolinska en Suecia,…
1. What people I don't know think my Hereditary Angioedema (HAE) swelling is: 2. What my previous boss thinks my swelling is: 3. What the ER thinks my swelling is: 4.…
Amanda luchó durante años para comprender el dolor y la hinchazón que se mantuvo experimentar. Sus médicos no podía entender era incorrecto y que nunca supo por qué la garganta…
¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
Muchas personas con angioedema hereditario (AEH) le dirá que realmente no están seguros de qué causa sus ataques, pero pueden identificar algunos factores desencadenantes comunes, tales como el estrés, la…
2006: "HAE is almost never suspected as a potential cause of acute pancreatitis." - PubMed.gov 2007: "Pancreatitis is rarely a complication of an acute HAE attack." - The Journal of…
Las víctimas de la enfermedad rara y potencialmente mortal angioedema hereditario (AEH) están levantando banderas rojas debido Australia se está quedando atrás en el diagnóstico y tratamiento de la enfermedad.…
Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten…
Monday, May 16th was HAE Awareness Day. In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to "create an environment…
There Is Hope For Those With HAE. The more you know, the more normal of a life you or your loved one can lead. Check out haea.org and don't let HAE…
En un estudio reciente publicado por Prime Therapeutics, la compañía informó que el costo anual del tratamiento de un paciente con AEH es más de $ 300.000. Queríamos ilustrar las…
Usted no puede siempre estar preparado para una emergencia- que es una especie de oxímoron. Sin embargo, puede pensar en el futuro y poner en marcha un plan de emergencia.…
Sufre de AEH? Biofeedback Reporting puede salvar su vida! Hay muchas noticias saliendo al rededor de BioRx, una empresa nacional de la especialidad farmacéutica, con sede en Cincinnati, Ohio. Se…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…
One thing that almost every person living with or caring for someone living with hereditary angioedema (HAE) knows is that over time... No one knows more about hereditary angioedema than those…
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…
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…
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?…
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