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“Our mission is to improve the health and well being of those affected by Alpha-1 through support to patients,
educating healthcare professionals and advancing public policy for the Alpha-1 Community.”

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    Testing for AAT Deficiency
    Simply click HERE
    Alpha One International Registry
    provides AAT Deficiency Testing. This AAT Deficiency Testing is a
    COMPLETE CONFIDENCIAL TESTING SERVICE
    and WITHOUT COST TO YOU.
    Please read the detail at: AAT Deficiency Detection Center
    Public Policy

    Letter from
    NORD (National Organization for Rare Diseases)

    Proposal for changes of Medicare payment for augmentation therapy.

    The following represents a letter from NORD (National Organization for Rare Diseases) in response to the proposals that will be going before Congress that will carve out payment for augmentation therapy for Alpha 1 patients. FY 2002 found the Alpha community facing this dilemma where services and drug payment were going to be bundled to one very low rate. This would have made it very expensive for any hospital outpatient division to provide augmentation therapy without losing money. Through the efforts of many, Alpha 1 patients were 'carved out' along with 10 other drug therapies for other rare diseases and payment remained the same.

    We find ourselves in the same position this year. As we garner further information, we will provide it here on this site.

    http://www.rarediseases.org/nord/washington/Revised_Position_Paper.pdf

    The following is a letter from Representative Christopher Cox (R-CA) in support of further payment of all orphan drugs under the Medicare program. Please read the letter and contact your legislator in regard to this proposal.
    We hope to provide a sample letter in the near future.

    http://www.rarediseases.org/pdf/chriscox_july112003.pdf

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