4th International Alpha-1 Patient Congress

and International Research Conference on Alpha-1 Antitrypsin

Barcelona, April 11-13 2013

Joint Session:
Patients and Scientists
Friday afternoon 12 April

Hilton Diagonal Mar Hotel
Passeig del Taulat, 262
08019 Barcelona, Spain

Contact details:

Hilton Barcelona

Congress Agenda

Thursday, 11 April

9:00am – 4:00pm Patient Registration

6:30 pm – Shuttle bus pick-up at hotel (meet in the lobby)

7.30 pm Dinner – Grifols Head Offices, Sant Cugat

Friday, 12 April

7:00-9:00am Patient Registration

9:15am Video – “Alpha-1: 50 Years of Discovery” with Sten Eriksson, Co-discoverer of Alpha-1

9:30am Alpha-1 Global Village: Official Opening Ceremony & “Get to meet the Alpha Community”

10:30am Break

11:00am 50 of Years Discovery and Scientific Research Progress: Robert Sandhaus, MD, USA, Robert Stockly, UK,  Eeva Piitulainen, MD, Sweden

12:00pm 50 Years Patient Perspective Across the Continents: Karen North, Europe, Steve Knowles, Australasia, Gordon Cadwgan, the Americas

12:30pm Lunch

1:30pm Registries for Patients: Current Status Overview for Alphas: Charlie Strange, MD, USA, Beatriz Lara, MD, Spain, Robert Stockley, MD, UK

2:30pm Roundtable Discussion: Status of Testing in Europe and USA: Now and the Future: Moderator – Luciano Corda, MD, Italy, Noel G. McElvaney, MD, Ireland, Joanna Chorostowska-Winimko, MD, Poland, Farshid Rouhani MS, USA, Mauricio Luisetti, MD, Italy

3:30pm Break

4:00pm Alpha-1 Therapeutics into the Future: Mark Brantly, MD, USA

5:00-6:00pm Joint Session – Research Conference update with Q & A Panel (Scientists and Patients): Jeffrey Teckman, MD, USA

7:00-8:30pm Reception and Dinner: Keynote speaker – John Walsh, USA


Saturday, 13 April

9:00am Health Technology Assessment and Chronic Diseases: “Justice leads to Access “: Professor Albert Farrugia, Belgium, PPTA Global Access

9:45am Status of Augmentation Therapy: Kenneth Chapman, MD, Canada

10:15am Self-care Management – AlphaNet Model: Robert Sandhaus, MD, USA

10:45am Break

11:00am Alpha-1 Resource Centers: Moderator: Bruno Balbi, MD, Italy – Speakers: Robert Bals, MD, Germany, Charlie Strange, MD, USA, Robert Stockley, MD, Lucinda Roberts, UK

12:00pm Nutrition and Inflammation in Alphas: Fedon Lindberg, MD, Anne-Grete Bjørlo and Geir Kvam, Norway (Case study for Alphas)

12:30pm Lunch with the Experts: opportunity to interact with congress experts (Conference Hall C)

2:00pm Group Activity – Your Alpha Organization: Getting Things Done
Facilitator: Michelle Hefley, USA
This is a core session to be attended by representative delegates of all patient organizations
- Fundraising: Carmen Netzel, Spain
- “Building Friends for a Cure”: Angela McBride, USA
- Communication and Team-Building: Brian McCarthy, Spain
- Team-building: Cathey Horsak, USA

4:40pm Action Plan: Alphas in Action
Moderator and Motivator: Brian McCarthy, Spain, Carmen Netzel, Spain
Objective: Select international working team to focus on areas chosen from group session.

5:15-5:45pm Closing Ceremony – The Next Step: John Walsh, USA
# Poster: Update on PLUS Progress and Plasma Therapy in EU Conference Hall C


Agenda en Español