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Cystic Fibrosis Trust

UKCFC 2016: day two, Thursday 8 September

So what does precision medicine mean for me? Day two is designed for all those with either a personal or professional interest in cystic fibrosis (CF).

The morning will give an insight into significance of both patient centricity and precision medicine for people with cystic fibrosis, and for their parents and carers. The afternoon workshops will look at the issues of how a joined-up, multidisciplinary approach is crucial for creating a 'Life Unlimited' by cystic fibrosis for everyone with the condition.

Take a look at the agenda, then register for a ticket.

Read about our speakers for day two.

UKCFC Agenda - day two

09:00 Registration, refreshments and networking


09:45 Putting patients at the heart of everything we do (session one)

Welcome and Introduction, by Ed Owen, Chief Executive of the Cystic Fibrosis Trust 
  • Making 'Life Unlimited' a reality
  • What does it mean to me, and how can I get involved

Keynotes

10:10 The future vision of patient involvement and engagement - Simon Denegri, National Director for Patients and the Public, NIHR

10:40 Addressing the challenges of encouraging research and innovation in the NHS, with George Freeman MP (by video) 


11:00 Coffee and networking


11:15 What does personalised medicine and patient centricity really mean for people with cystic fibrosis? (session two)

Keynote

Putting the patient first; using storytelling to shape the way we do medicine; how can physicians use 'narrative medicine' to better provide care for the cystic fibrosis community?

Benjamin Schwartz, Columbia University/The New Yorker


11:40 Open forum: What does personalised medicine mean for me? (session three)

Facilitator: Lawrence McGinty, former Science & Medical Editor, ITN News.

A facilitated discussion to explore patient-based care for people cystic fibrosis (with streaming and online interaction). This section will include Ed Owen, Simon Denegri, Oli Raynor, Tim Lee and Patrick Wilson (Lead Pharmacist, High Cost Medicines, Nottingham University Hospitals), as well as a carer.


12:45 Lunch and networking - lunchtime symposium TBC  


13:45 Afternoon workshops (session four)

Interactive sessions

1. Centre Directors meeting (closed) - Ed Owen, Chief Executive, Cystic Fibrosis Trust

2. Preparing for living a health adult life with CF - Chair: Helen Oxley, Consultant Clinical Psychologist, Manchester Adult Cystic Fibrosis Centre. With Phil Brewin, Consultant Clinical Psychologist, Nottingham University Hospitals, Rachel Massey-Chase, Clinical Psychologist, Kings College Hospital, Claire Oliver, CF Social Worker, University Hospital Southampton, Rebecca Fallon, Social Worker, Manchester Adult CF Centre, and Samantha Phillips, Clinical Psychologist, University Hospital Bristol.

3. Getting the most out of the UK CF Registry - Annie Jeffery, Registry Coordinator, Cystic Fibrosis Trust. Guide to using exports, queries and dashboard charts to improve your data quality and monitor clinical care, and update on upcoming Registry functionality.

4. Eating well for a healthy weight - Joanne Barrett, Chair of UK CF Dieticians Group

5. Evidence based medicine vs individualised pharmacotherapy in CF - Patrick Wilson, Lead Pharmacist - High Cost Medicines, Nottingham University Hospitals.

6. Physiotherapy and CF: alternative approaches -  Carwyn Bridges, Senior Physiotherapist, Adult CF Unit, Cardiff and Vale, and  Pamela Scarborough, Physiotherapist and yoga teacher


15.00 Coffee & networking


15.20 Cystic fibrosis: living a life unlimited (session five)

What will CF care look like in 2025? Understanding the changing care model and its full implications - speaker to be confirmed.


Chairman’s Comments and close of conference










Research

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

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What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

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