Scientific and Lay Organizations

Scientific Organizations

Alpha-1 is a condition that affects both the lung and liver. Alpha-1 researchers interact with other scientists through membership in a number of national and international scientific organizations that focus on lung or liver research, genetics, asthma and allergies, or family medicine practice.

Participation in these organizations includes sessions, symposia and presentations at annual meetings, and development of national and international standards and best practices in their respective fields. Some organizations that have featured Alpha-1 presentations or sessions at their meetings, or where Alpha-1 organizations focus awareness efforts include:

Lay Organizations

Alpha-1 organizations include scientific and lay (patient-centered) organizations. This includes patient groups organized to help each other through education, support and advocacy like the Alpha-1 Foundation; Alpha-1 Association AlphaNet or to assist with travel needs like the Mercy Medical Airlift organization.

Other organizations with information for Alpha-1 Antitrypsin Deficient individuals include the Children’s Liver Disease Network; the Rare Lung Disease Consortium and the Rare Liver Disease Consortium.

There are also countrywide, regional and local support groups throughout the world including groups in Europe, Canada, North America, Central and South America and to a more limited extent in the Middle East and Asia. These local groups can be found through the national websites listed above (Alpha-1 Foundation, Alpha-1 Association) or through the Alpha-1 International Registry (AIR) or at the website for Alfa Europe: European Federation for Alpha-1 Antitrypsin Deficiency.

The Alpha-1 Foundation, AlphaNet and Alpha-1 Association are organizations in the United States whose missions are to provide diagnosed individuals and their families with educational materials, support, referrals to services, access to therapies and to experts in Alpha-1 clinical care.

These organizations also serve as effective advocates on the local and national level to improve the lives of Alphas through legislation and funding to increase the number (and safety) of therapeutic options, increase research of Alpha-1, contain the cost of medications and insurance coverage. Other lay organizations include the Alpha-1 Puerto Rico Support Group with information on testing and clinical centers throughout Latin America, and The Australian Lung Association. For local support groups in Europe please consult the Alpha-1 International Registry website and click on each country link.

In the US, these organizations have become much more effective through strategic alliances with established national voluntary health organizations such as the National Health Council, other lung and liver patient organizations such as the American Lung Association and the American Liver Foundation through patient participation on the American Thoracic Society Public Advisory Roundtable and other national panels directed at blood safety, drug safety and development, and organ availability, such as the US Department of Health and Human Services Advisory Committee on Blood Safety and Availability and United Network for Organs Sharing (UNOS).

Alpha-1 is also classified as a rare genetic disease. The National Institutes of Health, Office of Rare Diseases defines rare diseases as “disorders or conditions affecting fewer than 200,000 individuals in the United States”.

The Alpha-1 organizations in the USA have therefore actively allied themselves with the Rare Lung Disease Consortium (www.cincinnatichildrens.org/research/project/rare-lung) and with the Rare Liver Disease Consortium as well as the more broadly based National Organizations for Rare Diseases and Genetic Alliance that represent genetic and rare conditions across the US. The equivalent rare disease organizations in Europe are found at the OrphaNet website.