University of Southampton

General admission

<p style="margin:0cm 0cm 10pt;line-height:16.866666793823242px;font-size:15px;font-family:Calibri, sans-serif;color:rgb(0, 0, 0);font-style:normal;font-weight:normal;text-align:start;text-indent:0px;text-decoration:none;width:100%;box-sizing:inherit">What is this session about?<p style="margin:0cm 0cm 10pt;line-height:16.866666793823242px;font-size:15px;font-family:Calibri, sans-serif;color:rgb(0, 0, 0);font-style:normal;font-weight:normal;text-align:start;text-indent:0px;text-decoration:none;width:100%;box-sizing:inherit">This is a panel discussion where we will hear from an adult with PCD and a parent of children with PCD sharing their thoughts on "What's needed for multidisciplinary PCD care?". We encourage people from all backgrounds to join. There will be opportunities to raise questions, make comments and discuss. <p style="margin:0cm 0cm 10pt;line-height:16.866666793823242px;font-size:15px;font-family:Calibri, sans-serif;color:rgb(0, 0, 0);font-style:normal;font-weight:normal;text-align:start;text-indent:0px;text-decoration:none;width:100%;box-sizing:inherit"> <p style="margin:0cm 0cm 10pt;line-height:16.866666793823242px;font-size:15px;font-family:Calibri, sans-serif;color:rgb(0, 0, 0);font-style:normal;font-weight:normal;text-align:start;text-indent:0px;text-decoration:none;width:100%;box-sizing:inherit">About the Panel:<p style="margin:0cm 0cm 10pt;line-height:16.866666793823242px;font-size:15px;font-family:Calibri, sans-serif;color:rgb(0, 0, 0);font-style:normal;font-weight:normal;text-align:start;text-indent:0px;text-decoration:none;width:100%;box-sizing:inherit">Emilie is a patient with PCD. She is 54 and discovered her pathology at the age of 45. Since then, Emilie has actively tried to understand better PCD, to try to manage it better. Since September 2022, she has been an active board member in the French association ADCP, and is currently in charge of research. Emilie is keen to participate personally also in research on PCD and try to devote some time to it, in addition to her full-time job at the European Commission, to being a mum of 2, to manage her PCD daily and above all to living a happy life!<p style="margin:0cm 0cm 10pt;line-height:16.866666793823242px;font-size:15px;font-family:Calibri, sans-serif;color:rgb(0, 0, 0);font-style:normal;font-weight:normal;text-align:start;text-indent:0px;text-decoration:none;width:100%;box-sizing:inherit">Fiona is Mum to two adult children who both have PCD. She chaired the <a href="http://www.pcdsupport.org.uk/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">PCD Support Group</a> between 2005 and 2021 where she helped transform the care of patients with PCD in the UK and contributed to global change in diagnostics and management of PCD. She was awarded a British Empire Medal for raising awareness of PCD in the 2021 New Year’s Honours. Fiona also chaired the Respiratory <a href="https://www.rbht.nhs.uk/research/our-research" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">Biomedical Research</a> Patient Group at the Royal Brompton for many years.  And continues to represent patients on the <a href="https://www.genomicsengland.co.uk/portfolio/respiratory-gecip-domain/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">Respiratory GeCip</a> for the 100k Genomes project, <a href="https://europeanlung.org/en/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">European Lung Foundation</a>,<a href="https://www.blf.org.uk/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">British Lung Foundation,</a> <a href="https://www.bronch.ac.uk/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">Bronchiectasis UK</a> as well as being  trustee of the <a href="https://www.ciliopathyalliance.org/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">Ciliopathy Alliance</a>. Fiona has been a patient representative for a number of research projects and still take an active role in the following projects: <a href="https://pcd.ispm.ch/en/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">Living with PCD</a>,  <a href="https://www.rwelive.com/virtual-series-2022-patients-as-stakeholders/" style="color:purple;text-decoration:underline;-webkit-user-select:auto;box-sizing:inherit">the CLEAR Trial</a> and very recently EMIRATES – a focus group for producing leaflets for thyroid cancer patients. She also regularly speaks to students about living with a genetic condition.

Hi <span contenteditable="false" data-custom-variable="{{firstname}}" fr-original-class="fr-deletable styled-tag-chip " fr-original-style style="background-color:rgb(248, 248, 255);border:1px solid rgb(191, 191, 255);border-top-left-radius:4px;border-top-right-radius:4px;border-bottom-right-radius:4px;border-bottom-left-radius:4px;color:rgb(42, 42, 196);display:inline-block;margin:0px;padding:1px 8px;font-size:11px;line-height:16px;-webkit-user-select:none;box-sizing:inherit">First name , Thank you for registering for the next ECR-PCD symposium. The Zoom meeting link will be sent out 24 hours before the event.  Best wishes,Katie and Yin Ting

What is this session about?This is a panel discussion where we will hear from an adult with PCD and a parent of children with PCD sharing their thoughts on "What's needed for multidisciplinary PCD care?". We encourage people from all backgrounds to join. There will be opportunities to raise questions, make comments and discuss.  About the Panel:Emilie is a patient with PCD. She is 54 and discovered her pathology at the age of 45. Since then, Emilie has actively tried to understand better PCD, to try to manage it better. Since September 2022, she has been an active board member in the French association ADCP, and is currently in charge of research. Emilie is keen to participate personally also in research on PCD and try to devote some time to it, in addition to her full-time job at the European Commission, to being a mum of 2, to manage her PCD daily and above all to living a happy life!Fiona is Mum to two adult children who both have PCD. She chaired the <a href="http://www.pcdsupport.org.uk/">PCD Support Group</a> between 2005 and 2021 where she helped transform the care of patients with PCD in the UK and contributed to global change in diagnostics and management of PCD. She was awarded a British Empire Medal for raising awareness of PCD in the 2021 New Year’s Honours. Fiona also chaired the Respiratory <a href="https://www.rbht.nhs.uk/research/our-research">Biomedical Research</a> Patient Group at the Royal Brompton for many years.  And continues to represent patients on the <a href="https://www.genomicsengland.co.uk/portfolio/respiratory-gecip-domain/">Respiratory GeCip</a> for the 100k Genomes project, <a href="https://europeanlung.org/en/">European Lung Foundation</a>,<a href="https://www.blf.org.uk/">British Lung Foundation,</a> <a href="https://www.bronch.ac.uk/">Bronchiectasis UK</a> as well as being  trustee of the <a href="https://www.ciliopathyalliance.org/">Ciliopathy Alliance</a>. Fiona has been a patient representative for a number of research projects and still take an active role in the following projects: <a href="https://pcd.ispm.ch/en/">Living with PCD</a>,  <a href="https://www.rwelive.com/virtual-series-2022-patients-as-stakeholders/">the CLEAR Trial</a> and very recently EMIRATES – a focus group for producing leaflets for thyroid cancer patients. She also regularly speaks to students about living with a genetic condition.

University of Southampton

ECR-PCD Symposium: What's needed for multidisciplinary PCD care?

General admission

Free