Let Us Now Praise Famous Men
James Agee 1941
The year 2013 marks the fiftieth anniversary of the publication of the paper by Carl-Bertil Laurell and Sten Eriksson on the link between emphysema and a deficiency of the protein alpha-1 antitrypsin. The importance of the research was immense. The publication was followed by many related discoveries. New avenues of research have vastly increased our knowledge of the biological processes taking place in the liver and the lungs.
Fifty years later the world-wide alpha community is reflecting on how far we have come and on what more needs to be done.
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Please take time to note the planned commemorative events and please read the entries in this, our e-Visitors Book.
Events:
- Regional events – World, Europe, Central and North America, South America, South-east Asia
- National events – United Kingdom
The Story
- The Beginnings – Early research and the breakthrough
- Years of progress – Alpha-1 opens up the world of the superserpins
- The Future – New directions and the hunt for a cure
Personal Perspectives
- Researchers and Clinicians – personal views from . . .
- Patients – personal views . . .
About Us
- Contact Us – send us your comments on 50 years of AATD.
- We are the Alpha-1 community of patients, researchers and doctors.
Timeline 1963 – 2013
1963: Alpha-1 antitrypsin deficiency first discovered in Sweden
1983: US coins term “Orphan Drug” through Orphan Drug Act
1987: Augmentation therapy with plasma-derived antitrypsin first introduced in the US
1988: First A1AT augmentation therapy marketed in US
1989: EU Transparency Directive 89/105/EEC
1989: First antitrypsin augmentation therapy marketed in EU
2000: EU introduces Orphan Drug Regulation No. EC/141/2000
2001: EU Clinical Trials Directive 2001/20/EC
2006: Licence for antitrypsin augmentation therapy extended to 14 EU countries and Switzerland
2009 – 2015: EU Communication on an Action Plan on Organ Donation and Transplantation
2009: EU Council Recommendations on an action in the field of Rare Diseases
2010: EU Directive on Human Organs intended for Transplantation EU/45/2010
2011: Commission Proposals on Pharmaceutical Pricing and Transparency of Reimbursement Measures
2011: EU Cross-Border Healthcare Directive 2011/24/EU
2012: Commission Proposal on Revised Clinical Trials Directive
2013: Development and implementation of National Plans on Rare Diseases
2013: Implementation of Cross-Border Healthcare Directive