Ist Iberian Congress 17-18 October 2009
Alpha-1-antitrypsin Deficiency made history, on the 17-18 October through the Ist Congress celebrated in the Spanish Language., and with a number of Portuguese participants also contribution in their native languages.
114 congress assistants attended and a small group of alpha children. This was considered to be more than satisfactory for the first Congress campaign ,in what is a rather difficult period in Spain, economically and because of adeversion to the Swine Flu threat this autumn.
Specialists at secondary care level and primary care doctors and nurses, joined in an event which shared information and research on AAT deficiency, from different pathologies.
The development of the Pediatric registry for Alphas was discussed, with interest from the medical sector. Different participants shared their opinions, and the next steps will involve determining the data input processes, and the degree to which these resposnbilities are shared by the users and the patients. The project needs further evalutation of benchmark models, in order to proceed to the next stage and build confidence amongst the potiental users.
The event was considered to be a success by the congress assistants, although for a first event, evidently there were areas where the programme should have been with less speakers, perhaps, and better moderation. We also initiated filming for the Documentary “Air” about COPD and alfa-1, as well as a footage for short videos on the Congress, which we will distribute on the internet. These sessions went extremely well, and the organisers were delighted to find that patients and healthcare givers, were very keen to talk about their personal experience of COPD and alfa-1, on film.
We thank all sponsors and patrons for their support in this event, and hope that the Spanish Alfa-1 Association, has now begun a tradition of National Congresses for alphas in the Iberian Peninsula.
Shane Fitch
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