Alpha-1 Global launches website, linking Alphas worldwide
Today marks an exciting milestone for the Alpha-1 community worldwide: The Alpha-1 Global website alpha-1global.org is up and running. The site provides a platform for Alphas to communicate and collaborate — a central network for exchange of news, information and ideas on improving Alpha-1 awareness, detection and access to care around the world.
Everyone is encouraged to become a part of Alpha-1 Global:
The website is the culmination of more than a year of planning. In April 2013, Alpha-1 leaders from 23 countries gathered at the 4th International Alpha-1 Patient Congress in Barcelona, Spain. Celebrating 50 years of progress, they agreed the next vital step was to create an organization fostering a strong global community. Alpha-1 Foundation President John Walsh agreed to put Foundation resources behind the initiative, and Alpha-1 Global was formed. Its new director, Gonny Gutierrez, recently answered questions about the organization.
- Sign up for the discussion platform via the special link on the Welcome page. Create your user name in the format firstname.lastname (for example: linda.smith).
- Even if you aren’t an active participant in discussions, the more people who sign up, the more successful and cohesive the global Alpha-1 community will become.
- Put a link to alpha-1global.org on your website or social media sites to show your support and affiliation.
The committee currently consists of seven dedicated members: Shane Fitch (Spain), Gunhil Norhave (Denmark), Karen North (UK), Catarina Pyrrait (Portugal), Steve Knowles (Australia), Frank Willersinn, MD (Belgium) and John Walsh (U.S.). Our first face-to-face meeting took place during the National Education Conference in Kansas City, early June. A second meeting is planned following the European Respiratory Society Congress in Munich (Sept. 6-10). We’ve built a very close team committed to Alpha-1 Global’s mission, for more information......
Alpha-1 UK Support Group
13th Annual Social Gathering and Information Day
Bentley Hotel Leisure Club and Spa
Newark Road, South Hykeham, Lincoln LN6 9NH
Saturday 20th September 2014
Our Annual Social Gathering and Information Day which this year is in the historic city of Lincoln is fast approaching. The event is one of the largest gatherings of Alphas and their families in the UK where you can meet and socialise with fellow Alphas and be updated by leading experts in the field of Alpha-1 Antitrypsin Deficiency.
It is a great time to catch up with old friends and meet new, it helps to put faces to names and gives you the opportunity to talk to many others who are in the same situation as you. The day is very informal and EVERYONE is welcome, wife's, partners, husbands, children, family members and any friends who might be interested, so if you have not yet booked your main contact for registration, hotel rooms etc is:
John L Mugford - firstname.lastname@example.org