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Methodological Note 2020

EFPIA Patient Organization Reporting Methodological Note


Interactions with Patient Organizations are a fundamental part of the activities that Jazz Pharmaceuticals undertakes. These interactions ensure that Jazz Pharmaceuticals understands the needs of patients and is able to obtain valuable information to allow the company to be truly patient-centric. Patient Organizations provide valuable insight to aid in the development and improvement of innovative treatments and practices. Jazz Pharmaceuticals fosters Patient Organization relationships based on mutual trust, respect and goals that reflect Jazz Pharmaceutical’s transparent and ethical behavioural standards.

Relationships between pharma companies and Patient Organisations are regulated through the EFPIA Code and national industry codes to enforce public disclosure of any support to, or collaboration with Patient Organizations. Jazz Pharmaceuticals is committed to following these guidelines to meet and maintain high standards of transparency and integrity between the pharma industry and Patient Organizations across Europe.


This document summarises the methodology used in preparing Jazz Pharmaceutical’s disclosure report on Transfers of Value to Patient Organizations, in accordance with article 24 of the EFPIA Code of Practice.

Scope of Disclosure and Definitions


Patient Organization (PO): not-for-profit legal entity (including the umbrella organisation to which it belongs), mainly composed of patients and/or caregivers, that represents and/or supports the needs of patients and/or caregivers and whose business address, place of incorporation or primary place of operation is in Europe.

Transfers of Value: Definitions and Categories

Transfer of Value (ToV): The provision of financial or non-financial/indirect support to Patient Organizations in the form of donations, grants or sponsorship (including in relation to events/meetings) or funding for contracted services provided over the reporting period.


The patient organization report for the Jazz will outline:

  • The type of support Jazz is providing to the patient organisation (e.g., – financial, indirect or non-financial)
  • The description of the nature of support or services provided by Jazz
  • The transaction amount in local currency if there is a monetary value attached

Countries Covered by the Report

Jazz Pharmaceuticals has affiliates in the following countries:

  • Austria covering Austria and Switzerland
  • Denmark covering Denmark, Finland, Norway and Sweden
  • France
  • Germany
  • Italy
  • The Netherlands covering Netherlands, Belgium and Luxembourg
  • Spain covering Spain and Portugal
  • UK covering UK and Ireland

ToVs made to Patient Organizations for all countries in which Jazz has a presence are included in a single regional report for Europe. If a specific country is not listed in the report this indicates that there were no ToVs to Patient Organizations in that country.

Reporting Period

The reporting period covers a full calendar year, immediately preceding the year in which the report is made.

Time of Disclosure

Disclosures must be made within 6 months after the end of the relevant Reporting Period on Jazz’s Member Company website according to the EFPIA code. The information disclosed must remain in the public domain for a minimum of 3 years after the time such information is first disclosed. The general deadline for disclosures is 30 June.