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lower schreef op 24 februari 2016 09:50:

First HAEi Report on South America
goo.gl/2VgN5I

The first Latin American (LATAM) HAE Patient Advocacy Forum organized by HAEi (the international umbrella organization for the world’s HAE patient groups) was held in the city of Buenos Aires, Argentina, in December 2013. Nine countries from the region participated: Argentina, Brazil, Chile, Colombia, Ecuador, Mexico, Panama, Uruguay and Venezuela. Also in attendance was a representative from Spain, which, as a Spanish speaking country, collaborated in the coordination and contributed to the meeting with the experience gained from the first European HAE Patient Advocacy Forum.

The concepts shared herein are the result of a survey conducted among the
representatives of the 9 LATAM patient organizations that attended the forum, as well as the discussions held during the meeting and the final conclusions reached. The aforesaid survey was conducted prior to the meeting, in November 2013, and its results analyzed beforehand. The surveyed countries covered a population of 434,001,510 people, in which the number of people with Hereditary Angioedema is estimated to be nearly
15,500 patients.

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Beets schreef op 24 februari 2016 21:20:

Swedish children with HAE report good overall health and quality of life despite symptoms – by A. Nygren, Karolinska Institutet and Karolinska University Hospital, Sweden, et al.:
This study explores various aspects of HAE in the Swedish paediatric population.
HAE symptoms were experienced by 23 children, including abdominal attacks (96 %), skin swelling (78 %) and swelling in the mouth and, or, upper airways (52 %).
Psychological stress was the most common trigger for abdominal attacks and trauma and sports triggered skin swelling.
The majority had access to complement-1 esterase inhibitor concentrate at home. Current health and quality of life were generally rated as good. (Acta Paediatr. 2016 Jan)

Risk of thromboembolism in patients with HAE treated with plasma-derived C1-inhibitor – by H. Farkas, Semmelweis University, Hungary, et al.: Sporadic reports and a study into the high-dose therapy of neonates with C1-INH concentrate administered in an off-label indication raised concerns that this drug might increase the risk of thromboembolism. A retrospective cohort study of 144 patients with C1-INHHAE compared the incidence of thromboembolism and its risk factors in patients who received pdC1-INH with those who did not receive pdC1-INH as well as with those treated with danazol or with tranexamic acid. The study did not find any evidence for an increased risk of thromboembolism during treatment with pdC1-INH, despite the presence of multiple predisposing factors. (Allergy Asthma Proc. 2016 Jan)

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