PCD patient conference 2023

Welcome to the 2023 PCD patient conference.

Passert
21.
november
2023
  1. 21. nov. 2023, 14:00 - 18:00
Register for the conference

Tid og sted

Når

  1. 21. nov. 2023, 14:00 - 18:00

Hvor

The conference in held online.

Register for the conference

Program

2pm - Opening words by Amelia Shoemark (Hansruedi Silberschmidt/ Amelia Shoemark)

Session 1    What is PCD - basics        

2:05 pm – 2:35 pm    Talk by Suzanne Crowley     
2:35 pm – 2:45 pm    Discussion led by Suzanne Crowley    

Session 2    Therapies/management incl. new treatments    

with Myrona Goutaki (tba / Myrona Goutaki)

2:45 pm – 3:05 pm    Pediatrics - Jobst Roehmel     
3:05 pm – 3:30 pm    Adult - Felix Ringshausen     
3:30 pm- 3:40 pm    Joint discussion, led by chairs
 
Coffee break  3:40pm – 4:10pm

Session 3    Research Update    

with Laura Behan     Emilie Wattellier/Laura Behan

4:10 pm - 4:25 pm: Genetics - Marie Legendre     
4:25 pm – 4:40 pm: Fertility - Johanna Raidt     
4:40 pm – 4:55 pm: Research priorities/ cohort studies - Myrona Goutaki     
4:55 pm – 5:10 pm: Joint discussion, led by chairs

Session 4              

5:10 pm – 5:25 pm: Living with PCD including mental health and diet, with Gea Restad and Lucy Dixon
 5:25 pm – 5:55 pm: Q&A of 2 or more patients and parents about living with PCD and joint discussion, led by Gea Restad/ Tamar Makhatadze/ tba     
5:55 pm – 6 pm    Closing words by Myrona Goutaki    

 

Plakat for konferansen som forteller at hovedtemaene er hvordan leve med PCD, pågående forskning, og terapi og strategier for håndtering av sykdommen hos barn og voksne