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6 tthh I n t e r n a t i o n a l C y s t i n o s i s C o n f e r e n c e September 23 26, 2010 Congress Village Ge.Tur. Viale Centrale, 29 33054 Lignano Sabbiadoro (UD) ITALY http://www.getur.com midway (100 km) between Venice and Trieste REGISTRATION & HOTEL FORM Please register as early as possible, but not later than S e p t e m b e r 1, 2 0 1 0. The registration form shall be sent by e-mail (cystinosis@quickline.it), fax (+39 040 7606590) or post (via Santa Caterina da Siena, 3 34122 Trieste (TS), Italy) to QUICKLINE TRADUZIONI & CONGRESSI www.quickline.it SECTION A PERSONAL DATA LAST NAME FIRST NAME ADDRESS CITY ZIP CODE PHONE FAX E-MAIL COUNTRY * CODICE FISCALE *A Only for Italian people WRITTEN CONFIRMATION OF YOUR REGISTRATION WILL BE SENT TO THIS E - MAIL ADDRESS

SECTION B LAST NAME ATTENDEE INFORMATION FIRST NAME ADULT CHILD AGE GENDER ACTIVITES (Y/N) AFFECTED BY CYSTINOSIS (Y/N) NOTE: CHILD CARE (2 6 YEARS) AND YOUTH ACTIVITIES (6 12 YEARS) ARE PROVIDED, IF REQUESTED, DURING CONFERENCE HOURS. SECTION C HOTEL RESERVATION DATE OF ARRIVAL EXPECTED ARRIVAL TIME DATE OF DEPARTURE EXPECTED DEPARTURE TIME MODE OF TRANSPORT PLANE TRAIN CAR AIRPORT VCE TRS AIRLINE FLIGHT # YES NO YES NO SHUTTLE SEPT, 23 SHUTTLE SEPT, 26 BUS SERVICE ON 2010 BUS SERVICE ON 2010 FROM AIRPORT TO GE.TUR FROM GE.TUR. TO THE AIRPORT ROOMS R ATES (Euros per person) 1 NIGHT 2 NIGHTS 3 NIGHTS SINGLE 58.00 EUROS 116.00 EUROS 174.00 EUROS DOUBLE 38.00 EUROS 0.76.00 EUROS 114.00 EUROS FAMILY (3-5 beds) 36.00 EUROS 0.72.00 EUROS 108.00 EUROS CHILDREN 3-6 YEARS IN FAMILY ROOM 22.00 EUROS 0.44.00 EUROS 065.00 EUROS CHILDREN 6-10 YEARS IN FAMILY ROOM 29.00 EUROS 0.58.00 EUROS 087.00 EUROS NOTE: ONE NIGHT STAY ONLY: PLUS 20%. CHILDREN 3 TO 6 YEARS OF AGE (NOT COMPLETED) RECEIVE 40% DISCOUNT. CHILDREN 0 TO 3 YEARS OF AGE (NOT COMPLETED) ARE FREE. CHILDREN 6 TO 10 YEARS OF AGE (NOT COMPLETED) RECEIVE 20% DISCOUNT.

RATE INCLUDES: BUFFET MEALS (BREAKFAST, LUNCH AND DINNER); TAP COLD WATER IN JUG AT DISPOSAL. RATE DOES NOT INCLUDE: DRINKS DURING MEALS (2.50 EUROS FOR ¼ LITRE WINE, ½ LITRE WATER); MEDICAL ASSISTANCE (10.00 EUROS EACH EXAMINATION); INDOOR OLYMPIC SWIMMING POOL (ENTRY: 2.50 EUROS PER PERSON). SECTION D QUESTIONS TO CYSTINOSIS CONFERENCE SPEAKERS PLEASE LIST ALL THE QUESTIONS YOU WOULD LIKE TO ASK AT THE CYSTINOSIS CONFERENCE. SECTION E T R I P T O V E N I C E (OPTIONAL) TO BOOK A TRIP TO VENICE ON SUNDAY AFTERNOON, 26TH SEPTEMBER 2010, PLEASE FILL IN THE FORM BELOW. TRIP FEE IS 78.00 EUROS PER PERSON. CHILDREN 0 TO 2 YEARS OF AGE (NOT COMPLETED) ARE FREE. MINIMUM: 30 PASSENGERS. RATE INCLUDES: BUS FROM LIGNANO SABBIADORO TO VENICE PUNTA SABBIONI AND RETURN; PRIVATE CRAFT TO/FROM ST. MARK S SQUARE; TOUR LEADER FOR ALL THE AFTERNOON FROM YOUR ARRIVAL AT ST. MARK S SQUARE AND BACK TO THE CRAFT AND TOURIST GUIDE FOR 2 HOURS. (NOTE: TOUR SUBJECT TO CANCELLATION IF THE MINIMUM NUMBER OF PARTICIPANTS IS NOT REACHED BY AUGUST 30, 2010) HOTELS IN VENICE: HEREINAFTER SOME HOTELS IN VENICE. MORE EXAMPLES ON http://www.hotels.com/ LOCANDA ANTICA VENEZIA ***, 100 MT FROM ST. MARK S SQUARE, CITY CENTRE, RATES FROM 145.00 EUROS FOR A DOUBLE ROOM, BB. HOTEL CAVALLETTO E DOGE ORSEOLO ****, 100 MT FROM ST. MARK S SQUARE, CITY CENTRE, RATES FROM 185.00 EUROS FOR A DOUBLE ROOM, BB. ANTONY HOTEL ****, 3.6 KM FROM VENICE AIRPORT, RATES FROM 123.00 EUROS FOR A DOUBLE ROOM, BB. RUSSOTT HOTEL VENEZIA SAN GIULIANO ****, 6 KM FROM VENICE AIRPORT, RATES FROM 90.00 EUROS FOR A DOUBLE ROOM, BB. SECTION F SUMMARY PLEASE, SPECIFY THE NUMBER OF PEOPLE (BOTH ADULTS AND CHILDREN) ATTENDING THE CONFERENCE, THEIR HOTEL RATES AND THE TOTAL FEE TO BE PAID FOR. ATTENDEES No. RATES ADULTS CHILDREN 3-6 YEARS CHILDREN 6-10 YEARS TRIP TO VENICE 78.00 EUROS TRIP TO VENICE (0-2 YEARS) 00.00 EUROS TOTAL FEE

SECTION G CREDIT CARD PLEASE DEBIT MY METHOD OF PAYMENT MASTERCARD VISA FOR THE AMOUNT OF EUROS CREDIT CARD HOLDER CARD NUMBER EXPIRY DATE CARD SECURITY CODE DIRECT BANK TRANSFER TO: BENEFICIARY: QUICKLINE SAS BANK: UNICREDIT BANCA IBAN CODE: IT 76 J 02008 02204 000100230804 SWIFT CODE: UNCRITB1884 REFUNDS CANNOT BE GUARANTEED FOR CANCELLATIONS MADE AFTER 30 AUGUST 2010. CANCELLATIONS BEFORE THIS DATE WILL BE SUBJECT TO A HANDLING FEE OF EURO 50.00. SECTION H PRIVACY (ITALIAN ATTENDEE ONLY) INFORMATIVA AI SENSI DELLA PRIVACY AUTORIZZO IL TRATTAMENTO DEI MIEI DATI PERSONALI AI SENSI DELLA LEGGE SULLA PRIVACY DLGS 196/2003 E S.M. FIRMA PER ACCETTAZIONE SECTION I USEFUL INFORMATION HOW TO ARRIVE TO LIGNANO BY PLANE THERE ARE 3 INTERNATIONAL AIRPORTS IN THE SURRONDINGS OF LIGNANO. TRIESTE, VENICE AND TREVISO. ARRIVAL: A SHUTTLE BUS SERVICE WILL BE ORGANIZED FROM VENICE, TREVISO AND FROM TRIESTE AIRPORT TO GE.TUR. VILLAGE AT SEVERAL HOURS ON SEPTEMBER, 23. DEPARTURE: A SHUTTLE BUS SERVICE WILL BE ORGANIZED FROM GE.TUR. VILLAGE TO VENICE, TREVISO AND TO TRIESTE AIRPORTS. PUBLIC SHUTTLE BUSES ALSO CONNECT LIGNANO TO BOTH AIRPORTS: - RONCHI DEI LEGIONARI (TS) LIGNANO: http://www.aeroporto.fvg.it/it/come_arrivare/trasporto_pubblico/partenze/19/lignano-sabbiadoro.htm - MARCO POLO (VE) LIGNANO: http://www.atvo.it/index.php?lang=it&area=25&menuid=25 www.atvo.it

BY CAR REACH LIGNANO TAKING A4 VENICE - TRIESTE MOTORWAY OR A23 TARVISIO - VENICE; THE EXIT FOR LIGNANO IS LATISANA, THEN TAKE THE LOCAL ROAD N. 354 TO LIGNANO SABBIADORO. BY TRAIN/BUS LATISANA TRAIN STATION IS JUST 20 KM FAR FROM LIGNANO. FOR EXAMPLE THE TRAVEL FROM MILANO CENTRAL STATION TO LATISANA STATION TAKES 4 HOURS AND COSTS AROUND 35.00 EUROS, AND THE ONE FROM VENEZIA STATION TO LATISANA STATION TAKES 1 HOUR AND COSTS 5.00 EUROS. FOR MORE INFORMATIONS SEE THE WEB SITE http://www.trenitalia.com. REGULAR BUS LINES CONNECT LIGNANO TO LATISANA (UDINE-MUZZANA LATISANA-LIGNANO: THE TRIP TAKES 26 MINUTES FROM LATISANA STATION TO THE STOP IN FRONT OF GE.TUR.: V.LE CENTRALE-COLONIE ). BUSES RUNNING TIMES: FROM 8.30AM TO 8.20PM. ON REQUEST, THE TIME TABLE WILL BE SENT BY E-MAIL. TOURIST ATTRACTIONS IN LIGNANO PARCO ZOO PUNTA VERDE http://www.parcozoopuntaverde.it/english/home_en.php VIA SCERBANENCO, 19/1, LIGNANO SABBIADORO (UD) THE ZOO PARK OCCUPIES AN AREA OF 100,000 SQ. M. SET IN A LOOP OF THE RIVER TAGLIAMENTO, AND HOSTS OVER 1,000 ANIMALS BELONGING TO 200 DIFFERENT SPECIES. RATES FROM 9.00 EUROS FOR CHILDREN (FROM 3 TO 11 YEARS) TO 12.00 EUROS FOR ADULTS. JUNIOR PARK http://www.netanday.it/junior/ VIALE CENTRALE LIGNANO SABBIADORO (UD) A LARGE PLAYGROUND IN LIGNANO SABBIADORO SET IN THE GREENERY WITH FOUNTAINS AND SMALL LAKES RICH IN LOCAL FLORA AND FAUNA. A PLACE FOR GAMES IN TOTAL FREEDOM AND SECURITY. QUALIFIED ENTERTAINERS WATCH AND FOLLOW THE CHILDREN AT THE GAMES. MINICRUISES http://www.saturnodageremia.it/ EXCURSIONS ALL YEAR ROUND. VISITS TO THE REGIONAL NATURE RESERVE "FOCI DELLO STELLA".