Exemple

European Reference Network (ERN) for Rare Renal Diseases (RDD)
FEDERG is fully committed in representing patients on the development of a Reference Network for Rare Renal Diseases (RDD). This page is dedicated to the information on this initiative.

 

Extract from the DG SANCO ERN page http://ec.europa.eu/health/ern/policy/index_en.htm:

Imagine if the best specialists from across Europe could join their efforts to tackle complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources. That’s the purpose of the European Reference Networks and it’s becoming a reality.
Health systems in the European Union seek to provide high-quality, cost-effective care. This is particularly difficult in the case of conditions requiring a concentration of resources or expertise, and even more so with rare or low-prevalence complex diseases or conditions…

The objectives of the ERNs are seen best achievable at EU level. These encompass better access of patients to highly specialised and high quality and safe care, European co-operation on highly specialised healthcare, pooling knowledge, improving diagnosis and care in medical domains where expertise is rare, helping Member States with insufficient number of patients to provide highly specialised care, maximising the speed and scale of diffusion of innovations in medical science and health technologies and being focal points for medical training and research, information dissemination and evaluation.

Participation of healthcare providers in the ERNs is voluntary and requires acceptance of the criteria and rules for assessment and evaluation. The purpose is not necessarily to create new care centres but to link existing ones, and/or recognise existing networks. These networks will work as permanent platforms at EU level.

PREVIOUS STEPS for ERN and RDD

This section described the chronological steps after 2014:

  1. 2014 March Legal decisions of EU DG SANCO to create ERNs as part of implementation of the Directive of patients’ rights in cross-border healthcare.
  2. June 10th 2015 Addendum to EUCERD recommendations of January 2013, setting the process and the 21 themes. This has been the starting point for FEDERG.
  3. July 2015 Initial contacts with a core team of nephrologists of EurenOmics (On going European funded Research project) to set the stage for a Rare Renal Diseases ERN, which should also include the various forms of polykystoses. FEDERG proposed as the voice for patient in the process.
  4. July 2015 FEDERG invited all rare renal associations (referenced in Orphanet) to join the move by either becoming a member of the federation or by approving FEDERG as the main stream for ERN RDD.
  5. Second ERN meeting in Lisboa 7-9 October 2015
  6. EURORDIS meetings in October 2015 (webinar and Council of federation in Paris 28-29th October): decision to create a Patient Advocacy Group (PAG) for each of the 21 themes of the ERNs.

NEXT STEPS for RDD-ERN

  1. November 2015: Core team (Clinicians and patients) to initiate the discussion and preparation of the ERN RDD
  2. December 2015 “PAG: RDD Consultation of patients representatives”. Objective: identify the features of ERN RDD we should be promoting/pushing in the process. Further patient’s consultations throughout the process to be performed whenever needed.
  3. January 12th 2016 partner meeting in Heidelberg
  4. February and March 2016: preparation of the proposal
  5. March 2016: DG SANCO issues the first call.
  6. April/May 2016: deadline for receiving proposals.

Documents and useful links:

 

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