PCD patient conference 2023

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