Experts by experience

Patient representation is core to ERNICA. The involvement of patient representatives in network activities is hugely valued. They are experts by experience. Below are the names of the current patient representatives involved in the network.

 Patient organisation

 Representative

 Representing

 EAT

 Graham Slater

 Esophageal Atresia 

 EAT

 Anke Widenmann-Grolig

 Esophageal Atresia 

 EAT

 JoAnne Fruithof

 Esophageal Atresia 

 CDH UK

 Beverley Power

 Congenital diaphragmatic hernia

 SoMA

 Nicole Schwarzer

 Hirschsprung Disease 

 SoMA

 Annette Lemli

 Hirschsprung Disease 

 Amorhi

 Duccio Cavalieri

 Hirschsprung Disease 

 

They may be involved with the following: 

At network board Level:

  • Representing the voice of the patient community within ERN ensuring (and being assured) the needs of people living with a rare disease are included in the strategic and operational delivery of the network, and to;
  • Create a bridge between the ERN and the patient community, ultimately to improve access to high quality diagnosis, care and treatment.

Disease-specific level:

  • Advise on disease specific activities and projects and engage with the appropriate patient communities
  • Contribute to the development of patient information, treatment policies, good practice guidelines and care pathways
  • Support the network to dissemination of information and communication to the wider patient community
  • Contribute to the development of research and research priorities
  • Provide advice on ethical issues and data protection on the application of personal data rules, compliance of information consent and management of complaints