Research & Innovation - Participant Portal


TOPIC : Orphacodes Project

Topic identifier: PJ-03-2018
Publication date: 25 January 2018

Types of action: HP-PJ Project
Opening date:
25 January 2018
Deadline: 26 April 2018 17:00:00

Time Zone : (Brussels time)
  3rd Health Programme 3HP website
Pillar: 3rd Health Programme
Work Programme Year: 3HP-2018
Topic Description

Currently, only a small fraction of rare diseases have codes in international nomenclatures, making it a challenge to trace patients with rare diseases in health information systems on a national and international level.The Commission expery group on rare diseases in its "Recommendation on Ways to Improve Codification for Rare Diseases in Health Information Systems' is calling for support of Orpha codes into member states health care information systems.

The objective of this action is to support Member states in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implementation precess should be guided by "Standard procedure and guide for the coding with Orphacodes" and "Specification and implementation manual of the Master file" both developed in a frame of the current RD-ACTION. This action should include following activities:

  1. develop additional necessary rules and guidelines for rare diseases codification
  2. support piloting of Orpahacodes implementation in at least four Member States (currently not having codification system for rare diseases)
  3. further suport cooperation and exchange of experiences between Member States on rare diseases codification
Topic conditions and documents

1.   Eligible countries: described in section 6 of the Call document.


2.   Eligibility and admissibility conditions: described in sections 5 and 6 of the Call document.


Proposal page limits and layout: Please refer to Part B of the standard proposal template.


3.   Evaluation

 Evaluation criteria, scoring and threshold: described in sections 8 and 9 of the Call document.

 For submission and evaluation process, see Guide for applicants – project grants.

4.   Indicative timetable for evaluation and grant agreement: described in section 3 of the Call document.


5.   Proposal templates and model grant agreements (MGA):

      Project (HP-PJ):

     Standard proposal template
     Multi-beneficiary Model Grant Agreement



6.   Additional requirements:
Please perform a financial viability self-check, using the PP tool of the financial viability self-check.

Members of consortium are required to conclude a consortium agreement, in principle prior to the signature of the grant agreement.

7.   Additional documents:

Health Programme Decision    

Annual work plan


EU Financial regulation

Submission Service

No submission system is open for this topic.

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