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

 


Potential Coordination of Rare Disease ERNs

This is a provisional list of the Healthcare Providers (HCPs) understood by the RD-ACTION team to be planning to coordinate the ERN in each Thematic Group.

Several important clarifications and caveats are necessary:

  • The purpose of this table is to facilitate transparency, cooperation and cross-talk between stakeholders planning to coordinate or join ERNs
  • Please note that this list is in no way connected to the formal European Commission application/evaluation/approval process for ERNs (official pages may be found here); rather, it represents the status quo regarding ERN proposals, based upon the RD-ACTION ERN ‘Matchmaker’.
  • The Matchmaker Tool -and consequently the table-  is built around the model espoused in the 2015 Addendum to the EUCERD Recommendations on RD ERNs which was adopted by the Commission Expert Group on Rare Diseases. The Joint Action supports the strategic guidance issues by the Board of Member States, which supports the CEGRD model and emphasises “the importance of developing ONE application per thematic grouping and not having competing applications under one grouping”.
  • Many – if not all- ERNs will arrange themselves into sub-domains at a more clinically-operational level. These sub-domains and their leads do not appear here; however, as overviews of each ERN proposal are received, they will be made accessible via the table below
 
 Thematic Grouping HCP Submitting Proposal to Coordinate Name of Potential Coordinator
Rare Bone Diseases (BOND) Istituto Ortopedico Rizzoli , ITALY Luca Sangiorgi
Paediatric Cancer ERN (PaedCan-ERN) St. Anna Kinderkrebsforschung e.V.– AUSTRIA Ruth Ladenstein
Rare Cancers and Tumours (Adult)** General Cancer Centre Léon Bérard – FRANCE Jean-Yves Blay
Rare Cardiac Diseases (GUARD-HEART) Academic Medical Centre, Amsterdam- THE NETHERLANDS Arthur Wilde
Rare Connective Tissue and Musculoskeletal Diseases (ReCONNET) Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana- ITALY Marta Mosca
Rare Craniofacial and ENT Erasmus Medical Centre, Rotterdam – THE NETHERLANDS Irene Mathijssen
Rare Endocrine Diseases (ENDO-ERN) Leiden University Medical Centre – THE NETHERLANDS Alberto Pereira
Rare Eye Diseases
(ERN-EYE)
Hôpitaux Universitaires de Strasbourg – FRANCE  Hélène Dollfus
Rare Gastrointestinal Diseases (ERNICA) Erasmus Medical Centre, Rotterdam – THE NETHERLANDS  Rene Wijnen
Rare Gynaecological & Obstetric Diseases TBC
Rare Haematological Diseases (eurobloodnET) Service d’hématologie séniors, Hôpital St Louis FRANCE  Pierre Fenaux
Rare Hepatic Diseases (ERN-LIVER) Newcastle Upon Tyne Hospitals – UNITED KINGDOM David Jones
Rare Hereditary Metabolic Diseases
(MetabERN)
Centre for Rare Diseases (ZSE) Helios Dr. Schmidt Kliniken Wiesbaden – GERMANY Maurizio Scarpa
Rare Immunodeficiency, Auto Inflammatory and Autoimmune Diseases Network (RITA) Newcastle upon Tyne Hospitals Foundation Trust, UNITED KINGDOM Andrew Cant
Rare Malformations and Developmental Anomalies and Rare Intellectual Disabilities (ITHACA) Central Manchester University Hospitals, UNITED KINGDOM Jill Clayton-Smith
Rare Multi-systemic Vascular Diseases CHU Paris Nord-Val de Seine – Hôpital Bichat-Claude Bernard, AP-HP, FRANCE  Guillaume Jondeau
Rare Neurological Diseases (ERN-RND) * University Hospital Tübingen – GERMANY Holm Graessner
Rare Neuromuscular Diseases
(EURO-NMD)
John Walton Muscular Dystrophy Research Centre, Newcastle Upon Tyne Hospitals UNITED KINGDOM Kate Bushby
Rare Pulmonary Diseases
(ERN LUNG)
Klinikum Goethe University Frankfurt – GERMANY Thomas Wagner
Rare Renal Diseases
(ERKNET)
Heidelberg University Hospital – GERMANY Franz Schaefer
Rare and Undiagnosed Skin Disorders (ERN-SKIN)   MAGEC (Centre de Référence des Maladies Rares et Génétiques à Expression Cutanée), Service de Dermatologie, Hôpital Necker Enfants Malades – FRANCE Christine Bodemer
Rare Urogenital Diseases Sheffield Teaching Hospitals NHS Foundation Trust – UNITED KINGDOM Chris Chapple (Michelle Battye)
TRANSPLANTATION (SOT & HSCT) IN CHILDREN – TRANSCHILD Instituto de Investigación Sanitaria del Hospital La Paz-IdiPAZ (SPAIN) Manolo López Santamaría
Rare and Complex Epilepsies (EPI-CARE) UCL Institute of Child Health Helen Cross
Genetic Tumour Risk Syndromes (GENTURIS) University Medical Center St Radboud Nicoline Hoogerbrugge

 

 

 

 


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.