Alpha1-antitrypsin deficiency patients

Transcription

1 Third World Congress of Alpha1-antitrypsin deficiency patients ROMA 2007 September Hotel Holiday Inn Rome West Preliminary program ORGANIZING SECRETARIAT CONGRESS TEAM PROJECT Via L. Mascheroni, Pavia - Italy Tel Fax [email protected] The Meeting is for patients!

2 5 pm Meet, greet, registration, formalities 6 pm WELCOME FROM ALFA EUROPE Larry Warren and Nuccia Gatta 6.15 pm EVERY COUNTRY ASSOCIATION INTRODUCES ITSELF 7.30 pm DISCUSSION September 28, afternoon Presentazioni e riflessione The Meeting is for patients! Patients must be aware of the disorders and they should be educated to manage the risk factors, the first signs of disease and cooperate for diagnosis and treatment. The main aim is to reach the best quality of life with the patient s cooperation pm CHAIRMAN: Cesare Saltini ALPHA1-ANTITRYPSIN DEFICIENCY: WHERE WE ARE, WHERE WE ARE GOING TO Maurizio Luisetti 9.00 pm WELCOME DINNER Note: Each participating country/group will be expected to give a short presentation (max 10 minutes) to the congress on patients possibilities and problems in their area. This will give us a perspective on the Alpha-1 situation world-wide. Written presentation will be appreciated, this will ensure that we can have a copy for each delegate and important information will not be lost. Patients may avail of a spirometry service which will be ongoing and free during the congress.

3 CHAIRMEN: Bruno Balbi, Gerry Mc Elvaney 9 am PATHOGENESIS OF LIVER DISEASE Francesco Callea 9.15 am PATHOGENESIS OF LUNG DISEASE David Lomas 9.30 am THE ASSESSMENT OF LUNG FUNCTION Claudio Tantucci am VASCULAR DISEASE: A REAL RISK? Alessandro Pezzini am DISCUSSION September 29, morning I perchè am INTERVALLO CHAIRMEN: Maurizio Luisetti, Mark Brantly am NATURAL HISTORY OF AAT DEFICIENCY IN THE CHILDHOOD Eeva Piitulainen am HETEROZYGOUS: A RISK? Niels Seersholm 2.30 pm Meet the expert session (one patient to one expert basis) Workshop 1. OXYGEN THERAPY Luca Bianchi 2. LIFE COPING ISSUES Kitty O Connor September 29, afternoon 3. REHABILATION AND NUTRITIONAL (Balbi s fellows) 3.30 pm FIRST GROUP 4.30 pm SECOND GROUP 5.30 pm THIRD GROUP 7.00 pm CITY TOUR 9.00 pm CENA DI GALA Gli esercizi am THE NEED OF STANDARDIZATION OF DIAGNOSIS Ilaria Ferrarotti am THE IMPORTANCE OF SCREENINGS Luciano Corda pm THE ROLE OF REGISTRIES AND PATIENT INVOLVMENT: THE PAAIR PROJECT Jan Stolk pm DISCUSSION 1.00 pm PRANZO

4 CHAIRMEN: Vittorio Grassi, Claus Vogelmeier 9.15 am PATIENTS EMPOWERMENT John Walsh 9.30 am THE CONVENTIONAL TREATMENT OF ALPHA1-ANTITRYPSIN DEFICIENCY RELATED DISEASE James Stoller am AUGMENTATION THERAPY AND ITS DEVELOPMENT Claus Vogelmeier am OTHER TREATMENT DEVELOPMENTS Robert Bals am NON PHARMACOLOGICAL TREATMENT OF LUNG DISEASE Bruno Balbi am DISCUSSION September 30, morning La cura am INTERVALLO Closing session am ONGOING RESEARCH AND DEVELOPMENTS Robert Stockley and Mark Brantly pm ARRIVEDERCI Larry Warren and Nuccia Gatta During the congress patients will be able to write their questions to speakers: the question will be read by the chairmen. INVITED SPEAKERS, CHAIRMEN AND TUTORS Bruno Balbi Veruno Italy Robert Bals Marburg Germany Luca Bianchi Brescia Italy Mark Brantly Gainsville USA Francesco Callea Roma Italy Luciano Corda Brescia Italy Nuccia Gatta Brescia Italy Vittorio Grassi Brescia Italy Ilaria Ferrarotti Pavia Italy David Lomas Cambridge U.K. Maurizio Luisetti Pavia Italy Gerry Mc Elvaney Dublin Ireland Kitty O Connor Dublin Ireland Alessandro Pezzini Brescia Italy Eeva Piitulainen Malmo Sweeden Cesare Saltini Roma Italy Niels Seersholm Copenhagen Denmark James Stoller Cleveland USA Robert Stockley Birmingham U.K. Jan Stolk Leiden Netherlands Claudio Tantucci Brescia Italy John Walsh Miami USA Larry Warren Dublin Ireland Claus Vogelmeier Marburg Germany Patient delegates are invited from all countries which have a patient association. Two patient delegates will have their travel and accommodation paid by the organization. Countries that are in process of setting up such associations are likewise invited and accommodated. Other Alpha-1 patients are very welcome to attend and participate in the congress at their own expenses.

5 GENERAL INFORMATION GENERAL INFORMATION VENUE Holiday Inn Rome West - S.S. 1 - Via Aurelia Km 8, Roma - Italy Tel Fax TRAVEL INFORMATION By plane: Rome has two international airports, Leonardo da Vinci (distance 25 km) and Ciampino (distance 26km) (Rome airports general information is available online at The Leonardo da Vinci airport is connected to Rome main railway station, named Stazione Roma Termini, by a direct train service called Leonardo Express which runs every day, every 30 minutes from 6.37 am to pm, with a journey time of 35 minutes. The ticket costs is 9.50 and can be bought locally. Train ticket must be validated (i.e. stamped with date and time at yellow machine located at the beginning or along the platforms) before getting onto the train. The Ciampino airport is connected to Rome main railway station (Roma Termini) by the Terravision Bus, service in connection with flights Ryanair, Easy-Jet, Hapag Lloyd Express, Wizz Air, Voli Regionali, My Air, Blue Air, Central Wings and Flyme (timetable and price available online at when selecting the Ciampino page). The courtesy bus service is free for guests staying in the hotel. The hotel management reserves the right to cancel and or modify this service at his own discretion without prior notice and liability. At Fiumicino airport the meeting point is at international arrivals Terminal C, upon availability as the minibus has limited seats. To utilise this service, please book at Hotel Reception. TIME TABLE MAY BE EFFECTED BY TRAFFIC CONDITIONS. By train: The Rome s Termini train station is about 11 km from the Hotel. From the train station take the underground. Hotel Holiday Inn is at 2 km from the Subway Station Cornelia Underground Station. By car: Take the ring Grande Raccordo Anulare direction Airport 1 exit 1 Aurelio direction Roma Centro/Vaticano. Hotel Holiday Inn is on the left carriageway after approximately 2 km. OFFICIAL LANGUAGE The official language of the Congress is English. A simultaneous translation into Italian will be provided. SLIDES A Power Point presentation will be provided. Speakers should bring files prepared with Power Point XP for windows in a USB key at the beginning of their session. Personal laptops may not be used. REGISTRATION The registration is free of charge for two delegates from each Association who are patients, a fee of 100 will be charged on non delegate participants (included medical professionals). Please fill in the registration form and mail it to the Organizing Secretariat by June 30, HOTEL RESERVATION A block of rooms has been reserved for the delegates. These rooms are available at a special rate, representing a significant discount of the usual seasonal rates. For Hotel reservation, please complete the Hotel Reservation Form and send it to the Organizing Secretariat by June 30, Two patient delegates from each Association will be guests of the meeting organization for 2 nights (bed & breakfast treatment, extras not included), any extra night will be charged to these participants according to the hotel room rates: single room e 145 per night, per room, B/B, VAT included double room e 175 per night, per room, B/B, VAT included Non delegate participants will pay their own hotel accommodation costs. Payment will be in advance by bank transfer or by credit card. ROOM CANCELLATION POLICY Cancellation or reduction in number of nights made within 30 days before the arrival: 50% of the total amount for nights reserved. Cancellation or reduction of nights within 15 days before the arrival 75% of the total amount for nights reserved. Cancellation within 7 days or in case of no-show: the total amount of the nights reserved. Please note: only written cancellations or variations (by fax or by ) will be accepted. TRAVEL EXPENSES REFUND All travel refunds will be issued on site to two delegate patients of each Association. Please purchase airline tickets at the lowest economy fare and send in advance your refund form to the Organizing Secretariat (at least 15 days before the meeting) enclosing the: travel agency receipt together with flight/train tickets e-tickets (if you do not have an original paper ticket, please send your receipt indicating price). Please also note that express train from the airport will be reimbursed but taxis, buses and city means of transportation will not be reimbursed. Accompanying persons and non delegate participants will pay their own travel expenses.

6 GENERAL INFORMATION SOCIAL EVENTS The Welcome dinner will take place on September 28 at 8.30 pm The bus city tour will take place on September 29 at 7.00 pm The Gala Dinner will take place at on September 29 at 9.00 pm Please book your participation when registering. OXIGEN THERAPY Patients should advise about any special needs. CLIMATE AND CLOTHING The weather in September is usually very mild. It is advisable to bring a jacket or dress as evenings may be cooler. Rainwear is also advised. INSURANCE Conference Organizers and Hotel Holiday Inn cannot accept liability for personal injuries or for loss, or damages to property belonging to Congress participants (or their accompanying persons), either during or as a result of the Congress. Please check the validity of your own insurance. REGISTRATION AND HOTEL RESERVATION FORM VARIATIONS The Scientific and Organizing Secretariat reserve the right, for technical and/or scientific reasons, to make any change to the Congress programme. *** ORGANIZING SECRETARIAT CONGRESS TEAM PROJECT Via L. Mascheroni, Pavia - Italy Tel Fax [email protected]

7 REGISTRATION AND HOTEL RESERVATION FORM REGISTRATION AND HOTEL RESERVATION FORM Third World Meeting of Alpha1- Antitrypsin Deficiency Patients Roma, Italy - September 28-30, 2007 Please carefully fill in the form with all personal data, room quantity and type and send it to Congress Team Project by June 30, The Organizing Secretariat will send by fax or e- mail a Guest Confirmation. I will participate as: Congress Delegate Surname Affiliation Address Other First Name Zip code City Country I ll attend the: Welcome dinner nr. of persons Gala dinner nr. of persons Bus tour of Rome nr. of persons SPECIAL NEEDS: diet wheel chair oxygen therapy in room oxygen therapy refill FLIGHT DETAILS: Arrival date Arrival time N. of flight Departure date Departure time N. of flight Flight economy rate e (for reimbursement request) Phone VAT Code/Personal Fiscal code* Accompanying person Registration fee Congress Delegate free of charge Fax REGISTRATION AND HOTEL ROOM PAYMENT: Bank transfer (the bank fees will be charged on your account) in favour of Congress Team Project s.r.l. account n IBAN Code IT24 G of the Bank Intesa- Paolo - Branch n , Corso Cavour 1, Pavia - Italy, (please state the reason of the transfer and send the copy of the bank transfer by fax ) Credit card (authorization for the total cost of e ) Visa Carta Si Eurocard Mastercard American Express Other e 100 (VAT included) Hotel Accommodation Nr. of rooms: nr. Double single use e 145 per night, per room, B/B, VAT included nr. Double nr. Double (two beds) e 175 per night, per room, B/B, VAT included Arrival date: / / 07 Departure date: / / 07 Nights Nr: * VAT code or Fiscal code are mandatory for invoicing purposes Card Nr Card holder s name Date of birth By sending this form I accept the conditions here stated. Signature Expiration date Date According to the Italian law 196/03 we inform you that we will use your personal data only for purposes connected to the administration.