Please join us for a Conference Call on Wednesday, March 28, 2012 at 1:00 p.m. Eastern

Draft Agenda:

  • Update the Prescription Drug User Fee Act (PDUFA) reauthorization process
    • Accelerated Approval Language:  ULTRA/FAST/TREAT Acts – EveryLife Foundation
    • EXPERRT Act –  Cystic Fibrosis Foundation – invited 
    • Expediting New Treatments to Patients: FDA Approval Mechanisms – Friends of Cancer Research – invited
  • Accelerated Approval Challenges in Oncology – National Venture Capital Association
  • Newborn Screening Legislation in CA – Hunter’s Hope Foundation
  • Health IT Now! Coalition – JC White Consulting
  • HR 2746, the Cancer Drug Coverage Parity Act of 2011 – Patients Equal Access Coalition (PEAC)  – invited
  • Affordable Care Act, State Implementation of Essential Health Benefits –  National PKU Alliance – invited

The agenda is open, please submit agenda items to patientadvocate@everylifefoundation.org


To receive the call in number, please click yes below to register:

YES

Announcements:  RDLA is pleased to announce that we have opened an office in Washington DC for all rare disease organizations to use while visiting DC.  The office includes a phone, computer, use of a conference room, printer, and copy machine. To reserve office space for a certain date, please contact patientadvocate@everylifefoundation.org.

About us:   Rare Disease Legislative Advocates is a collaborative organization designed to support the advocacy of all rare disease groups.  RDLA works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation.  RDLA’s goal is to bring the rare disease community together, grow the patient advocacy community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity to be heard on Capitol Hill and in State government.

 

 

 

1 thought on “Legislative Advocates Conference Call: PDUFA Update”

  1. Ann Salladin says:

    Julia: I am very computer illiterate. Have been looking and searching everything but can’t find the notes from the first part of the conference call here in Facebook. The part titled Update the PDUFA reauthorization process and two below it Accelerated Approval Language and EXPERRT. Maybe I am looking for the wrong thing. Is there a transcription of what was said in those portions? That’s what I am looking for so I can read what was missed. Of course it was my fault for coming in late, again I apologize. Perhaps it isn’t here.
    Ann Salladin

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