| The 32nd ECFS Conference web pages are sponsored by Aop Orphan |
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Pre-Conference Programme
CF Europe Meetings 8-9 June 2009
Physiotherapy Short Course 9-10 June 2009
International Physiotherapy Group Annual General Assembly & Case Presentations 10 June 2009
ECFS Clinical Trials Network Meeting - 10 June 2009
ECFS Diagnostics Network Working Group Meeting - 10 June 2009
ECFS Neonatal Screening Working Group Meeting - 10 June 2009
ECFS Registry Working Group Meeting - Moved to 11 June 2009
European CF Nutrition Group Meeting - 10 June 2009
International Nurse Specialist Group/CF (INSG/CF) Meeting - 10 June 2009
Psychosocial Special Interest Group Meeting - 10 June 2009
Joint Psychosocial Special Interest Group/International Nurse Specialist Group/CF Meeting - 10 June 2009
CF Europe meetings June 8-9 2009
CF Europe invites all European CF associations and patient representatives to the pre-conference meetings in Paris, France.
Monday June 8
From 12:00 - Registration and Lunch
13:30 - Welcome and introduction of participants (Presentation of associations)
14:30 - General Assembly
15:30 - Break
16:00 - Projects
17:30 - End of meeting
19:30 - Musical Dinner
Tuesday June 9: Capacity and network building conference
09:00-10:00 - Update on CF care and Research - Franck Dufour, Scientific Director Vaincre la Mucoviscidose (France)
CF and media
10:00-10:45 - Training session: successful contacts with the media (by a media expert)
10:45-11:15 - Coffee Break
11:15-12:15 - Contacting the media, experiences throughout Europe
12:15-12:30 - CF & the media, what did we learn? Messages to take home!
12:30-13:30 - Lunch
Lobbying for better care
Moderator: Ulrike Pypops (patient advocate, Belgium)
13:30 - Lobbying for free enzymes, an expeience in Romania - Problems and solutions. The whole group is invited to help to find solutions.
14:00-14:30 - Successful experiences throughout Europe, interesting models
14:30-15:00 - Discussion and conclusions
15:00 - Coffee break
1st European CF Awareness Week 2009
15:30-17:00
- A European Awareness Campaign, November 9-15, 2009
- Events in the European Parliament, Brussels, November 11, 2009
- National activities and campaigns
- Join the Awareness Day!
17:00 - Wrap up
Conference venue (CF Europe meetings 8-9 June)
Vaincre la Mucoviscidose (French CF Association)
181 Rue de Tolbiac,
75013 Paris, France
(Metro: Place d'Italie or Tolbiac)
Tel: +33 1 40 789191
Hotel (CF Europe meetings 8-9 June)
A limited number of rooms have been reserved at the Ibis Tolbiac at 50 meters of the meeting place, at the very reduced rate of Euro 80 for a single and Euro 90 for a double room. If you want to book a room, please contact Birgit Dembski at as soon as possible as this price cannot be guaranteed. Further information on the CF Europe programme here
Physiotherapy Short Course 9-10 June 2009
9 June: 08:30-17:00
10 June: 08:30-12:00
Title: Management of Infants with Cystic Fibrosis / Musculo-skeletal assessment
Moderators: Filip Van Ginderdeuren (BE) and Hugues Gauchez (FR)
This one and a half day course is aimed at Physiotherapists who would like to update their knowledge on both the treatment of infants with cystic fibrosis and on musculo-skeletal assessment and treatment.
On Day 1, the course will focus on lung physiology, assessment and airway clearance techniques as they relate to infants. This will be followed by a look at the use of physical activity in infants and toddlers and the transitioning of care to toddlers and children.
Day 2 will focus on Musculo-skeletal issues, including postural assessment, prevention and treatment of musculo-skeletal problems.
| Day 1 - Tuesday June 9th 2009 08:30-17:00 | |
| 08:30 | Introduction |
| 08:45 | Lung Physiology in infants to include ventilation and preserving lung function, early symptoms and aims of treatment - Maggie McIlwaine (CA) |
| 10:00 | Coffee Break |
| 10:15 | Infant assessment to include oesophageal reflux and negative effects of crying - Brenda Button (AU) |
| 11:00 | Different way of working with infants - Positioning and modified PD - Brenda Button (AU) |
| 11:45 | Assisted Autogenic Drainage - Filip Van Ginderdeuren (BE) |
| 12:45 | Lunch |
| 13:30 | Positive Expiratory Pressure - Louise Lannefors (SE) |
| 14:15 | Activity - Louise Lannefors (SE) |
| 15:00 | Break |
| 15:30 | Transitioning care to toddlers and children - Preserving lung function through time - Maggie McIlwaine (CA) - Introduce huffing, blowing games, bubble PEP - Maggie McIlwaine (CA) - Progression of activities to include aims of exercise - Louise Lannefors (SE) |
| Day 2 - Wednesday June 10th 2009 08:30-12:00 | |
| 08:30 | Assessment of posture and muculoskeletal system - Brenda Button (AU) - Postural assessment - Thoracic mobility - Urinary incontinence |
| 10:00 | Coffee Break |
| 10:30 | Preventing postural problems - Louise Lannefors (SE) - Respiratory pump mechanics - Maintaining thoracic mobility |
| 11:15 | Treatment of musculo-skeletal problems - Louise Lannefors (SE) |
| 12:00 | End |
International Physiotherapy Group Annual General Assembly & Case Presentations
10 June
12:30 - Annual General Assembly
14:00-16:15 - Physiotherapy Case Presentations
Moderators: Filip Van Ginderdeuren (BE) / George Davidson (CA)
14:00-14:15 - A viable pregnancy? - R. Dentice (AU)
14:15-14:30 - Won't eat, won't treat, it won't do! Issues with transition - C. Dawe (UK)
14:30-14:45 - Turning purple over physio - a battle of pressure - N. Cox (AU)
14:45-15:00 - Non invasive ventilation as airways clearance technique in an adult patient with cystic fibrosis - M. Rodriguez Hortal (SE)
15:00-15:15 - Pushing us to the limit - beyond the boundaries of conventional airway clearance - G. Morgan (UK)
15:15-15:30 - Successful use of Insufflator/Exsufflator and Non-Invasive Ventilation in a patient with a broncho-pleural fistula - F. Raeside (UK)
15:30-15:45 - Use of the Nintendo Wii Fit to help motivate exercise and increase activity levels after a period of prolonged illness - H. Douglass (UK)
15.45:16:00 - Too much exercise: How should it be managed? - V. Gettins (UK)
16:00-16:15 - Best Case Presentation Award by the Expert Panel
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ECFS Clinical Trials Network Meeting
10 June 2009 - 13:30-17:00
ECFS Diagnostics Network Working Group / EuroCareCF
10 June 2009 - 09:30-13:00
| 09:30 | NPD results across Europe - final analysis - I. Bronsveld |
| 09:50 | Harmonisation of ICM across Europe - N. Derichs |
| 10:20 | Delphi round 1 "Diagnostic work up and terminology in subject with symptoms suggestive of CF - K. De Boeck/A. Munck/K. Southern |
| 11:00 | Coffee Break |
| 11:30 | CFTR related disorder group meets diagnostic group: towards a common statement - C. Férec |
| 12:30 | Preparing the Paris spring meeting - I. Sermet/A. Munck |
ECFS Neonatal Screening Working Group Meeting
10 June 2009 - 13:30-16:30
| 13:30 | Introduction, Progress Report |
| 13:45 | Newborn Screening in Brittany, an historical perspective on the French National Programme - Claude Férec |
| 14:45 | The challenges of implementing newborn screening in Russia - Nataliya Kashirskaya |
| 15:15 | Q&A Session with panel for those implementing NBS |
| 15:30 | Consensus on the management of Infants following NBS - Kevin Southern (on behalf of Isabelle Sermet) |
ECFS Registry Working Group Meeting
Moved to 11 June 2009 18:15-19:15
Update on progress towards data collection, registry reports and common software
European CF Nutrition Group Meeting
10 June 2009 - 09:30-16:30
| 09:30-10:00 | Welcome, Registration and Coffee |
| 10:00-11:00 | Annual General Meeting |
| 11:00-12:45 | Original Contributions |
| 12:45-14:00 | Lunch |
| 14:00-14:40 | "Zince in CF" - Stephanie Van Biervliet |
| 14:40-15:10 | Case study presentation 1 |
| 15:10-15:30 | Coffee |
| 15:30-16:00 | Case study presentation 2 |
| 16:00-16:30 | Case study presentation 3 |
International Nurse Specialist Group/CF (INSG/CF) Meeting
10 June 2009 - 09:30-12:30
09:30-09:45 - Welcome - Val Hall (Chair)
09:45-10:15 - Annual General Meeting
10:15-11:00 - ECORN-CF - Judy Bradley
11:00-11:30 - Coffee
11:30-12:25 - Abstract presentations and best care award:
- The extended role of the CF healthcare professional - it is time to re-evaluate our role? - L. MacDougall, Dundee, UK
- Clinical status at the start of IV treatment and effect on daily lie - K. Herlitz, Gothenburg, SE
- Estimating risk associated with home-based intravenous antibiotic therapy (IVAT) - C. Glasscoe, Liverpool, UK
12:25-12:30 - Summary
12:30 - Lunch
The afternoon session is jointly held with the Psychosocial Special Interest Group
Psychosocial Special Interest Group Meeting
10 June 2009 - 09:30-12:30
09:30-09:45 - Welcome - Mandy Bryon and Maria Malmborg
09:45-11:00 - Psychosocial Provision for Cystic Fibrosis Services in:
- Sweden - Maria Malmborg
- UK - Helen Oxley
- Italy - Paula Catastini & Francesca Lupi
- Germany - Tanja Besier
- France - Maya Kirszenbaum
- Denmark - Liat Damsbo Lund
- Belgium - Trudy Havermans
11:00-11:30 - Coffee
11:30-12:00 - The significance of experiential avoidance concerning anxiety and depression in parents of children with CF - U. Smrekar, Innsburck, Austria
12:00-12:25 - A Tool to Facilitate Transition to Adult Care - N. Renton, Liverpool, UK
12:35-12:30 - Wrap-Up
12:30 - Lunch
The afternoon session is jointly held with the International Nurse Specialist Group/CF
Joint Psychosocial Special Interest Group/International Nurse Specialist Group/CF Meeting
10 June 2009 - 13:30-16:30 - Ideas of innovative Practice
13:30-13:35 - Welcome - Su Madge & Mandy Bryon
13:35- 13:55 - Open monitoring of adherence: is it better in those patients who bring their device for download? - P. McCormack, Liverpool, UK
13:55-14:15 - Pregnancy and differing perspectives of patients and caregivers - I. Eisenstadt, Jerusalem, Israel
14:15-14:35 - The introduction of a new patient "Welcome Pack" - L. Speight, Cardiff, UK
14:35-15:00 - Pilot Study: impact of cystic fibrosis on emotional and marital satisfaction - A. Parent, Lille, France
15:00-15:30 - Coffee Break
15:30-15:50 - Use of patient held drug information cards to improve adherence - a questionnaire survey - G. Brady, Dundee, UK
15:50-16:20 - Patient satisfaction in cystic fibrosis clinics - results from focus groups - U. Smrekar, Innsbruck, Austria
16:20-16:30 Wrap-up
10 June 2009 - 17:00-18:00 - ECFS Clinical Trials Network Committee
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