Fra pressemeldingen:
«Alpha-1 Foundation names Global Program Director
to help build Alpha-1 web-based communications platform
Alpha-1 leaders from 23 countries met in April 2013 at the 4th International Alpha-1 Patient Congress in Barcelona, Spain, and ended the Congress with the decision to form a global working group to act on the needs they considered most important to individuals with Alpha-1 (Alphas). Their priorities were: more awareness of Alpha-1; access to treatment, especially augmentation therapy; and more testing, so that Alphas can be properly treated without the usual years of delay in diagnosis.
The Alpha-1 Foundation offered its leadership and resources to help build a web-based communications platform for the global Alpha-1 community. The goal is to connect Alpha-1 organizations and individuals around the world in order to share ideas and strategies on the three priorities named at the Congress.
The Foundation is pleased to announce that Hillegonda (Gonny) Gutierrez has been hired as Global Program Director, to help organize the Alpha-1 community. Gutierrez is a Dutch citizen, now living in Denver, Colorado, with extensive project management and coalition-building experience in the international not-for-profit world.
A provisional steering committee of representatives from around the world is being formed to choose the content and functionality of the global communications platform and to assist with developing a needs assessment survey tool that can be used by Alpha-1 communities anywhere.»
Alfa-1 Norge (tidl. Alfa-1 foreningen i Norge) 