Quite some things are ongoing in our UnDiagnosed Patients Working Group. The screening process for the CF systematic review is ongoing. At the same time, our clinical Task Force Griuos (TFs) are kickstarting their work to identify prerequisite diagnostic procedures to diagnose CF, ILD, PCD, and PH. Two patient workshops have been scheduled by Matt-Bolz Johnson, Andrea Cembrero, and Gergely Meszaros aiming to collect patient experiences on the barriers and enablers of the patient pathways aiming to collect patient experiences on the barriers and enablers of their rare disease patient pathways.
All these three workstreams are important for the development of an UnDiagnosed Patient Pathway, defining the entry of UDPs to the ERN. We are very grateful for the enthusiasm and commitment to this task of our WG members and look forward to the next steps.
UDP WG and we are looking forward to the next steps, which are the kickstart of the TFs, the patient workshops, and the first results of the Systematic Review
