13th international symposium on mucopolissacaridoses and related diseases

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

August 13 - 17, 2014Praia do Forte | Salvador | Bahia | Brazil

Why Latin America?

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• The International MPS Symposium was never before held in Latin America, a region with 500 million inhabitants

• Latin America has several reference centers for LSDs, which diagnosed over 1.000 new MPS patients on the last few years

• Hundreds of MPS patients are now being treated with ERT and other management measures in many Latin American countries

• There are patient associations already organized in most Latin American countries

Why Latin America?

Why Brazil?

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Brazil is the largest and most populated country in Latin America, having borders with 10 other nations

• The MPS Brazil Network* diagnosed over 700 MPS patients around the country, a large part of them already receiving ERT and/or other treatment measures

• Several patient organizations, now working together under the umbrella of the MPS Brazil Alliance, are well established and could provide support for this meeting

*partinership between diagnostic and treatment services founded in 2004

Why Brazil?

The North East Region of Brazil

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Were large part of the MPS patients are

• Thereareclustersoffamiliesalreadyidentified on several Northeastern states of Brazil

• Economicandculturalbarriersmakedifficulttofamilies of this region to participate in meetings abroad

The North East Region of Brazil

The North East Region of Brazil

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Being a recognized tourist destination, has several beautiful, convenient, safe and easily accessible venues for international meetings.

The North East Region of Brazil

The North East Region of Brazil

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Climate and pleasant temperatures all year round

• TheseacoastjustnorthofSalvadorbenefitsfromtheseaside location and is accessed by a good road network

• The coast of Northeast Brazil enchants tourists with its coral reefs, palm trees and beautiful beaches

The North East Region of Brazil

Why Bahia?

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Bahia has the most ancient European settlement in Brazil, andthefirstBraziliancapital (Salvador)

• Bahia has 14 million inhabitants, being the 4th most populated state in Brazil

• The capital of Bahia, Salvador, is a large cosmopolitan city, with 3 million inhabitants

Why Bahia?

Why Bahia?

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Bahia is known as the state of all colors, where races, religions, music, gastronomy and culture meet and mix, with a vibrant result.Why Bahia?

Why Bahia?

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• TheseacoastjustnorthofSalvadorbenefitsfromtheseasidelocation and mild climate, and is accessed by a good road network

• Holding the meeting in a modern resort with conference facilities in a Northeast Brazil beach close to an international airport would meet location, access and safety requirements

Why Bahia?

Why Bahia?

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Modern International Airport

• Located 20 km from the city center and

50 km from Praia do Forte (hotel zone)

• DirectInternationalflightsto: Miami, Frankfurt, Lisbon, Paris, Buenos Aires, Main Brazilian cities.

Extending your week... In few hours you can get Amazônia, Rio de Janeiro, Foz do Iguaçu, Fernando de Noronha and many other beautiful sights...”

• Numberofflightsexpectedtoincrease as Salvador will be one of the 2014 Football World Cup sites

Why Bahia?

Praia do Forte

• The village is now a well-known destination for tourist who look for a sea side place plenty of hotels, restaurants and handicraft shops

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Praia do Forte, untilfewyearsagoafishingvillage, hastheremainsofoldfortificationsbuilt by the Portuguese many centuries ago.

• Praia do Forte is well known also by the project of preservation of turtles Projeto Tamar

• Perfect locations, by the sea and just 50 km north (by a modern road) of the International Airport of Salvador

• All-inclusive and convenient prices, allowing participants to enjoy and relax

• Excellent accommodation and conference facilities, full accessibility for handicapped people, safe and with emergency health care available

Resorts

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Excellent accommodation and conference facilities, full accessibility for handicapped people, safe and with emergency health care available

Children’s Program• All guests of hotels can enjoy various activities and sports facilities offered by the complex. There are over 40 options!

• Equestrian Centre, Nautical Centre, Poliesportivo Center, Tennis Center.

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• Capoeira Afro-Brazilian art form that combines elements of martial arts, music, and dance.

Children’s Program

• Visit to TAMAR Project at Praia do Forte (marine turtle protection program) and Praia do Fortefishingvillage

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• The Olodum School’s mission is the development of citizenship and preservation of black culture. This pioneering project of popular education originated in african brazilian project Drumroll, developed in 1984

by Olodum, consisting of classes free block african percussion,

african and strokes - brazilian short.

• Visit to TAMAR Project at Praia do Forte (marine turtle protection program) and Praia do Fortefishingvillage

• With a partnership with Federal University of Bahia we could have students of physiotherapy, occupational therapy, physical education, educational psychology and medicine involved in support activities on a volunteer bases

Health Care Facilities | Support to Families

• With partnership with health insurance companies we could have available ambulances and also helicopters for emergencies

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

• With a partnership with Federal University of Bahia we could have students of physiotherapy, occupational therapy, physical education, educational psychology and medicine involved in support activities on a volunteer bases

The date

• Organizing the meeting just after the football world cup would allow to take advantage oftheseimprovementswithoutcompetingforflights,hotelsandalsospaceonthemedia

• Brazil is the country of football (over 29,000 football clubs and 2 million registered players), and in June/July of 2014 will host the FIFA Football World Cup

13 - 17 August 2014

• Preparing for this cup, the country is improving infrastructure, including hotel, communications, airports and surface transportation, in order to adequately receive millions of people from many countries who will come for the World Cup

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

World Cup 2014

Scientific Committee

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

Prof.ROBERTOGIUGLIANIwillchairtheScientificProgramandwillinvolveontheScientificCommitteeinternationalexpertsandthemostactiveLatinAmericanandBrazilianspecialistsonthefield.

He is Professor at the Department of Genetics of the Federal University of Rio Grande do Sul, in Porto Alegre, Brazil. He is also Director of the WHO Collaborating Center for the Development of Medical Genetics Services in Latin America and Coordinator of the Brazilian Institute of Population Medical Genetics.

TheCommitteewillbeintegratedbykeyplayersontheMPSfield in Brazil. Dr. Ana Maria Martins (São Paulo), Dr. Angelina Acosta (Salvador) and Dr. Dafne Horovitz (Rio de Janeiro) already agreed inparticipate.OpinionleadersontheMPSfieldfromLatinAmerica and the rest of the world, including the past presidents of MPS symposia, willalsobeinvitedtointegratetheScientificCommittee.

• The Brazilian Alliance of MPS was formed to integrate the several MPS association in activity in the country, which now can speak with one voice; it is coordinated byReginaPrósperoandhastheparticipationofthefollowingassociations:

• REPRESENTANTE ALIANÇA BRASIL DE MPS | REGINA PRÓSPERO• ASSOCIAÇÃO ALAGOANA DE MPS | SANDRA MARIA CANSANÇÃO SAMPAIO• ASSOCIAÇÃO PERNAMBUCANA DE MPS | BRENO BLOISE - DJANNINI BLOISE DE ARAÚJO• ASSOCIAÇÃO BAIANA DE MPS | MÁRCIA DE OLIVIERA• ASSOCIAÇÃO NATALENSE DE MPS | ANDREA SANTOS MOTTA VICENTE• ASSOCIAÇÃO MINEIRA DE MPS | MIRIAN SANDRA GONTIJO DE OLIVEIRA• ASSOCIAÇÃO PAULISTA DE MPS | NILTON PRÓSPERO• ASSOCIAÇÃO DOS FAMILIARES DE DOENÇAS GRAVES | MARIA CECÍLIA J. MARTINIANO DE OLIVEIRA • ASSOCIAÇÃO GAÚCHA DE MPS | CELSO JUAREZ THIESEN DA SILVA

13TH INTERNATIONAL SYMPOSIUM ON MUCOPOLISSACARIDOSES AND RELATED DISEASES

The Brazilian Alliance of MPS will work together with MPS associations from other Latin American countries and with the International MPS Network to organize an interesting program for families and children

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