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Sinds 1997 is er een werkgroep die opkomt voor patiënten met alpha-1 antitrypsine deficiëntie, genaamd Werkgroep Alpha-1 Nederland. Vrijwilligers van deze groep geven informatie en brengen mensen met deze aandoening met elkaar in contact.

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NB: op dit moment wordt de site geactualiseerd. Het kan voorkomen dat u nu nog onjuiste oude informatie tegenkomt; we hopen deze voor eind augustus up to date te hebben gebracht.