From09:30 RegistrationandRefreshments
10:00-10:05
10:05-11:15 LowProteinCooking&IMDs hostedbyHelenMorris,MSUK withDrSrividyaSreekantam&AnneDaly
11:15-11:30
11:30-11:40
11:40-12:15
1:30-2:30
2:30-2:45
2:30-2:45
2:45-3:45
From09:30
10:00-10:05
10:05-11:15 LowProteinCooking&IMDs hostedbyHelenMorris,MSUK withDrSrividyaSreekantam&AnneDaly
11:15-11:30
11:30-11:40
11:40-12:15
12:30-1:15
1:30-2:30
2:30-2:45
2:30-2:45
2:45-3:45
From09:30 RegistrationandRefreshments
10:0010:05
10:20
Plenarywithmainconference
KirstyHoyle(CEO,MetabolicSupportUK)
Welcome/OpeningRemarks(RDCNSession)
SpeakersThinesGaneshamoorthy&ProfessorKassimJavaid
10:30 RDCNvisionandprogressionUpdate
SpeakersThinesGaneshamoorthy&ProfessorKassimJavaid
KeyPerformanceIndicators:
SpeakersThinesGaneshamoorthy&ProfessorKassimJavaid
Whydoneedthem(Thines/Kassim)
Currentstatusforrarebonediseases(Kassim)
Patientfeedback-adaptedsurveyBBS(Thines)
10:40
Clinicianfeedback(Kassim)
Tablediscussion(Separatetables-Clinicans/Patients) -Monthlyvsrolling;whichpatients/centres -Whatwoulddowiththeresultsfromindicators
11:00 Comfortbreak
Jointactivity
Whatthresholdsforeachindicator–whatdoesgoodlooklike Implementationinfirstyear
11:15
Whatwoulddowithresultsfromindicators
Communication/Nextsteps
12:45 Lunchbuffet
1:30
Trainingupdate(20mins)
-Patientadvocacy(NivedaKiridaran) -AnnualRarebonediseaseconference(DrNeelam Hassan)
Nextstepsfortraining Tablediscussion
-HCP-training-otherdisciplinesgap -Self-advocacyrights-dissemination> whatpatientsneedanddevelopresources -Whatalreadyoutthere -Howtowideraudience
2:45 Comfortbreak
3:00
Nextstepsforthenetwork Clinicians,patientsandcaregivers(Jointsession)
3:45 Summaryandclose(RDCNsession)
SpeakersThinesGaneshamoorthy&ProfessorKassim Javaid
3:45-4:00
Rejoinmainroomforclosingremarks MetabolicSupportUKteam