Search Results for "matchmaker"

ERN ‘Matchmaker’ Resource

The ‘Matchmaker’ process is designed to be user-friendly and straightforward:

  1. Anyone interested in joining an RD ERN/establishing cross-talk with others in the same Thematic Grouping should click on the appropriate link below
  2. The user will be directed to a Form which requests several few core details
  3. Upon submission of this form, the data will be transmitted to the RD-Action team at Newcastle University, UK
  4. At intervals of approximately 3 weeks a spreadsheet of the responses received for each Thematic Grouping will be emailed to all those submitting their data under that same Thematic Grouping
  5. The onus is then on the specialists to use this information to make contact with one another, to continue to shape applications in each field, with the aim of encouraging collaboration and avoiding duplication

Please note that this process is informal and is entirely separate to the formal EC and MS activities around ERNs. Regrettably, RD-ACTION is not able to provide tailored support with ERN applications. Please also note that in each of these areas, coordinators have been established and proposals are quite advanced

! The Matchmaker will no longer accept new entries after 30th April; however, you will be able to find details of the Proposals here

 


European Reference Networks (ERNs)

RD-Action continues the work of the previous Joint Action (EJA) to support the Rare Disease field in conceptualizing, implementing, and evolving  European Reference Networks (ERNs).

 

Latest News and Resources: 

  • RD-ACTION compiled responses from the Applicant Network Coordinators, to establish a policy support paper: What do Coordinators require from an ERN ICT platform?:
  • On 28th September 2016, we organised a face-to-face meeting between the Applicant Network Coordinators and the Board of Member States of ERNs – find the agenda and report here
  • On 28-29th September, RD-ACTION organised a large workshop on Sharing Data for Virtual Care in ERNs – find out more and download the outputs here:

 

Outputs of RD-ACTION Matchmaker exercise and the ERN Applications

To facilitate discussions and collaboration between specialists, RD-Action’s Policy WP launched an informal Rare Disease ERN ‘matchmaking’ exercise in 2016. More details are available here

 

Meaningful Patient Involvement

As per the legal Acts and the Addendum to the Recommendations on RD ERNs, active patient involvement and patient-centeredness is essential in ERNs. EURORDIS has launched the EPAG (EURORDIS Patient Advisory Group) initiative to enable democratic patient representation – full details (and the names of appointed representatives) may be found here 

 

Resources and FAQs on ERNs

*Please note that this list is not intended to be instructive – it simply demonstrates where a) the first 300 Matchmaker respondents initially placed their disease specialism, and b) the perspectives of EURORDIS patient organisation members.