Patient-Expert Meeting 2017

Patient-Expert Meeting 2017

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On behalf of the organising committee, we would like to invite you to the host city of the 2016 Olympic Games, Rio de Janeiro, Brazil on Monday 4th September 2017 for the 2nd International Homocystinurias Patient-Expert Meeting. The meeting is scheduled as a pre-meeting to the 13th International Congress of Inborn Errors of Metabolism (ICIEM). For more information on the ICIEM, click here.

Meeting details:

Date: Monday 4th September 2017
Time: 8:00am – 18:00pm
Location: The Windsor Convention and Expo Center
R. Martinho de Mesquita, 129 – Bloco 2 – Barra da Tijuca, Rio de Janeiro – RJ, 22620-220

Register Now

The 1st International Homocystinurias Patient-Expert Meeting was held in Prague, Czech Republic last year on International Rare Disease Day.  It was a collaborative effort between HCU Network Australia and the European Network and Registry for homocystinurias and methylation defects (E-HOD) and stands out as a success. The event provided a platform for the exchange of patient experiences and needs by establishing a specialised forum to bring together patients, clinicians and researchers.

Watch last year’s highlights:

In Rio, we are excited to welcome back many of the clinicians and researchers who presented at last year’s meeting. We are also delighted to welcome all new speakers to the programme.

We look forward to seeing you there.

Kind Regards,
Tara Morrison, HCU Network Australia Director and Chair

Prof. Henk Blom, E-HOD coordinator, University Medical Centre Freiburg, Germany

Prof. Ida Schwartz, Medical Genetics Service – HCPA, Genetics Department – UFRGS, Brazil

 

The Patient-Expert Meeting is generously supported by:

Em nome do comitê organizador, gostaríamos de convidá-lo para o Segundo Encontro Internacional de Especialistas e Pacientes com Homocistinúrias, que ocorrerá no Rio de Janeiro, Brasil, a cidade anfitriã dos Jogos Olímpicos de 2016, no dia 4 de setembro de 2017 (segunda-feira), o. Este encontro é um pré-evento do Congresso Internacional de Erros Inatos do Metabolismo (ICIEM). Para mais informações sobre o ICIEM, clique aqui.

Detalhes do encontro:

Data: Segunda-feira, 4 de Setembro de 2017
Horário: 8:00 – 18:00
Local: The Windsor Convention and Expo Center
R. Martinho de Mesquita, 129 – Bloco 2 – Barra da Tijuca, Rio de Janeiro – RJ, 22620-220

Faça sua inscrição

O Primeiro Encontro Internacional de Especialistas e Pacientes com Homocistinúrias realizado em Praga, República Checa, em 2016, no Dia Internacional das Doenças Raras. Foi um esforço colaborativo entre a HCU Network Australia e a Rede e o Registro Europeu para Homocistinurias e Defeitos de Metilação (E-HOD). O evento proporcionou uma plataforma para o intercâmbio de experiências e necessidades dos pacientes, estabelecendo um fórum especializado para reunir pacientes, profissionais de saúde e pesquisadores.

Veja os destaques do ano passado:

Estamos felizes por agradecer os profissionais e pesquisadores que participaram do encontro em Praga e felizes por receber todos os novos palestrantes.

Estamos ansiosos para encontrá-lo no Rio de Janeiro.

Cordialmente,
Tara Morrison, Diretora e Presidente da HCU Network Australia.

Prof. Henk Blom, Coordenador do E-HOD, University Medical Centre Freiburg, Alemanha.

Prof. Ida Schwartz, Serviço de Genética Médica – HCPA, Departamento de Genética – UFRGS, Brasil

 

O Patient-Expert Meeting é generosamente apoiado por:

For sponsorship opportunities please contact Tara Morrison at tara@hcunetworkaustralia.org.au.

Programme

Please note the programme is subject to change.

Register Now

8.00 Registration open

JOINT STREAM | Chair: Prof. Ida Schwartz

8.45 – 9.00 Welcome
Introduction to homocystinurias and EHOD
Prof. Henk Blom, Germany
9.00 – 9.20 Quality of Life in Homocystinuria patients Prof. Ida Schwartz, Brazil
9.20 – 9.40 Guidelines for the diagnosis and management of CBS deficiency Dr. Andrew Morris, UK
9.40 – 10.00 Guidelines for diagnosis and management of the cobalamin related remethylation disorders and MTHFR deficiency Prof. Matthias Baumgartner, Zurich
10.00 – 10.20 Qatar: A unique experience Dr. Tawfeg Ben-Omran, Qatar

10.20 – 10.40 COFFEE BREAK


10.40 – 11.00 An overview of how our understanding has developed and current knowledge for CBS deficiency Prof. Bridget Wilcken, Australia
11.00 – 11.20 Looking forward: Enzyme Replacement Therapy for CBS deficiency Prof. Jan Kraus, USA
11.20 – 11.40 Strategies to  Repair Mutant CBS Proteins Prof. Warren Kruger, USA
12.00 – 12.20 Research strategy, priorities and aims: a patient organisation approach Margie McGlynn, USA

12.20 – 13.50 INTERACTIVE LUNCH


PANEL DISCUSSIONS


13.50 – 15.10 CBS deficiency Panel Discussion: Q & A
Chair: Dr. Kaustuv Bhattacharya, Australia
Prof. Bridget Wilcken, Australia
Prof. Ida Schwartz, Brazil
Prof. Viktor Kozich, Czech Republic
Dr. Andrew Morris, UK
Patient advocate TBC
13.50 – 15.10 CblC and MTHFR Panel Discussion: Q & A  

Dr. Carlo Dionisi Vici, Rome
Prof. Matthias Baumgartner, Zurich
Patient advocate TBC


15.10 – 15.30 COFFEE


SCIENTIFIC STREAM | Chair: Prof. Henk Blom


15.30 – 15.50 Newborn screening for homocystinurias and methylation disorders Prof. Victor Kozich, Czech Republic
16.10 – 16.30 Mouse models of CBS deficiency: What have we learned? Prof. Warren Kruger, USA
16.30 – 16.50 Homocysteine and Psychiatric Disorders Dr. Vania Almeida, Brazil
16.50 – 17.10 First results CblC disease from EHOD registry Dr. Carlo Dionisi Vici, Rome
17.10 – 17.30 H2S Prof. Victor Kozich, Czech Republic
17.30 – 17.50 Consequences of the complex regulation of homocysteine metabolism Prof. Henk Blom

PATIENT STREAM | Chair: Tara Morrison


15.30 – 15.50 Novel patient organisations:
What is available and what is planned for the future:
HCU Network Australia
HCU Network America
Associação Brasileira de Homocistinuria
Tara Morrison, Australia
Margie McGlynn, USA
Simone Arede, Brazil
16.10 – 16.30 Patient care in Brazil: opportunities and challenges Dr. Soraia Poloni, Brazil
16.30 – 16.50 Mental health and behaviour challenges and strategies for management Dr. Raphael Massuda
16.50 – 17.10 Importance of Natural History Studies and Registries in the homocystinurias Prof. Harvey Levy, USA
17.10 – 17.30 Dietary intervention in CBS deficiency Beatriz Frangipani, Brazil
17.30 – 17.50 Clinical management of cblC deficiency: experience from a US natural history study Dr. Irini Manoli, USA

18.00 CLOSE

Sponsors

The Patient-Expert Meeting is a collaborative venture organised by HCU Network Australia, the European Network and Registry for Homoystinurias and Methylation Defects (E-HOD) and the ICIEM local organizing committee.  It is generously sponsored by HCU Network Australia, Recordati Rare Disease Foundation and Orphan Technologies.

HCU Network Australia

HCU Network Australia is a national, charitable organisation established in 2014 with a vision “to be a driving force in the journey to a cure, improving quality of life along the way”. This overarching vision informs the direction of HCU Network, inspiring and motivating all who are involved with its activities.

Our priorities are to:

  • Connect and support people impacted by homocystinuria;
  • Improve the diagnosis path to enable appropriate treatment;
  • Provide education and information to people impacted by homocystinuria;
  • Encourage and support clinical research, research for novel therapies and ultimately a cure; and
  • Raise funds to achieve our objectives.

HCU Network Australia is governed by an Executive Committee. We are registered and classified as a Health Promotion Charity by the Australian Government. We are also endorsed with Deductible Gift Recipient (DGR) status by the Australian Taxation Office.

HCU Network Australia hopes to achieve meaningful progress
for the HCU community and raise awareness of the unmet needs of those a affected by the disorder.

RRD Foundation

The Recordati Rare Diseases Foundation promotes the accurate diagnosis and care of patients affected by a rare disease. To achieve this, the Foundation facilitates the organisation of independent training and education in rare diseases; organised by healthcare professionals for healthcare professionals. It does this by:

  • Providing up-to-date training on when to suspect a rare disease, diagnostics, clinical presentation, best care and current treatment strategies in order to improve rare disease recognition and management in the medical setting.
  • Sharing experience in the management and outcome of rare diseases where individual experience is by their nature limited.
  • Improving dialogue between different medical specialities, particularly in multi-system diseases.
  • Strengthening scientific collaboration and encouraging research in rare diseases.

The rarity of patients and the high phenotypic heterogeneity of rare diseases, combined with the lack of knowledge, information and training result in frequent delays in correct diagnosis and installation of appropriate care and treatment. Teaching courses focusing on rare diseases are very sparse.

Junior doctors and scientists attending the foundation learn from the experience of renowned international experts and discuss cases that were previously a mystery to healthcare professionals entering the field. As a consequence they are more able to care for their patients with rare disorders.

In the more specialist and advanced courses, the sharing of information and experience improves recognition of rare conditions and ultimately improves the management and outcome of patients.

The Recordati Rare Diseases foundation’s goals and ambitions for the future are also an increased collaboration with patient associations, to contribute in reaching out and creating awareness, not only to healthcare professionals but also to patients and the general public.

Orphan Technologies

Orphan Technologies is dedicated to creating life changing therapies for patients and care givers. We are committed to developing first-in-class therapeutics, surrounding our research and development with industry and academic thought leaders, and then investing efficiently to rapidly accelerate innovation to patients.

Our mission is to advance treatments for a portfolio of rare diseases, aiming to positively transform the lives of patients.

Quite simply, we put patients first. While innovative research and development is our backbone, we take the time to listen to what the patients and medical community are telling us. Basic research advances the field but our focus is on bringing therapeutics to patients that improve patients’ lives as quickly as possible.

We understand that developing first-in-class therapies requires collaborating with the medical community, academic researchers, and patient groups. Fostering long term partnerships to advance patient care is part of our DNA and we are always looking to expand our pipeline with new innovative products targeting rare and ultra-rare diseases.

Erytech

RRD Brasil

Recordati Rare Diseases do Brasil is the subsidiary of Orphan Europe, an European company dedicated to provide innovative therapies for rare diseases, like Porphyrias, Cystinosis, Homocystinuria and Hyperammonaemia due to NAGS/CPS1 deficiencies among others.

Speakers

Dr. Carlo Dionisi-Vici

Italy

Dr. Carlo Dionisi-Vici, paediatrician is Head of the Unit of Metabolic Disease at the Bambino Gesù Children’s Research Hospital in Rome, Italy; is President of the Italian Society for Inborn Errors of Metabolism and Neonatal Screening (SIMMESN) and Council member of the Society for the Study of Inborn Errors of Metabolism (SSIEM). His clinical and research focus includes organic acidemias, urea cycle defects, homocystinurias, management of metabolic emergencies, mitochondrial and lysosomal disorders and hyperinsulinism. He has conducted translational research for the development of guidelines in inborn errors of metabolism and applied new technologies to improve diagnosis, prevention and treatment of metabolic diseases.

Dr. Tawfeg Ben-Omran

Qatar

Dr. Ben-Omran received his speciality training in clinical & metabolic genetics at the Hospital for Sick Children, University of Toronto, Canada. He has obtained both FRCPS & FCCMG in Medical Genetics in 2006.  Currently, he is a senior consultant and Head of Clinical and Metabolic Genetics at Hamad Medical Corporation. He is an Associate Professor at Weill Cornell Medical College, Qatar & New York-USA. He is also a Distinguished Visiting Scientist at Boston Children’s Hospital-USA.

He contributes to the body of published knowledge in clinical and metabolic genetics, with over 60 published articles in peer reviewed journals, book chapters and abstracts. He is reviewer for many clinical genetics journals.

He is an active clinical researcher, collaborating on projects with local, regional & international communities.  He is a lead primary investigator in many high profile research projects & clinical trials to evaluate the long-term effects of enzyme replacement therapy in patients with different lysosomal storage disorders. His main scientific interests include genetics of brain malformation& microcephaly, white matter disorders, dysmorphology, autosomal recessive disorders. In addition, Dr. Ben-Omran is an external advisor and expert for E-HOD (European registry and network for homocystinurias and methylation defects).

He is recognized as an expert in genetic disorders of the Arab population. His national & international presence is clear.  In 2013, he received the “Princess Aljawhara Center Award for The Best Research in Basic Genetics” the most competitive & prestigious awards. He received Research Award from MRC-HMC for Homocystinuria project and Stars of Excellence Award 2011 for both Pioneering Newborn Screening & specialized care of Genetic Diseases in the Middle East. Recently, awarded the Stars of Excellence in research 2014: Cutting Edge of Research in Medical Genetics.

He has memberships in many societies including:  American Society of Human Genetics, European Society of Human Genetics, Society for the Study of Inborn Errors of Metabolism, Middle East Metabolic Genetic Group, the Middle East & North Africa Newborn Screening Initiative, Middle Eastern Lysosomal Storage Diseases Expert Council Advisory Board, Child Health Research Advisory Committee, International Society for Prenatal Diagnosis, Chairman of Middle East Metabolic Dieticians Group & Founder Member & Regional Representative of SSIEM Adult Metabolic Physicians Group.

Dr. Andrew Morris

UK

Andrew Morris is a Consultant and Senior Lecturer in Paediatric Metabolic Medicine. He works on the Willink Metabolic Unit, which is part of Genomic Medicine in the Central Manchester University Hospitals. This unit has 6 consultant metabolic paediatricians and provides a service to the North of England through a clinical network. Dr Morris has been a consultant since 1996 first in Newcastle-upon-Tyne and then at Great Ormond Street Hospital in London, before moving to Manchester in 2003. He has extensive experience of inborn errors of metabolism in children and some experience with adults. His research has primarily concerned the diagnosis and management of mitochondrial disorders and fatty acid oxidation defects. He has considerable experience of managing patients with classical homocystinuria and remethylation disorders. He is on the Steering Group for E-HOD, the European Network and Registry for Homocysinurias and Methylation Defects; he is Leader of the Classical Homocystinuria Guidelines Group and the Work Group on Evaluation of the Project.

Tara Morrison

Australia

Tara Morrison is director and chair of HCU Network Australia.  Her connection to this disorder is a personal one: her two sons were diagnosed with Classical Homocystinuria at ages 5 and 1 years.  At the time of diagnosis the Morrison Family were left with many unanswered questions.  Their response has been to try and change this experience for others.

In 2014 Tara founded HCU Network Australia and serves voluntarily as Director and Chair of the Board.  She is eager to utilize her personal and professional experience to achieve real outcomes for individuals affected by the disorder and their families.

Tara has practiced law in private practice for the past 10 years.  She has worked in a range of areas and specializes in family law and building and construction.  Tara holds a double degree in Arts and Law.  She is a solicitor admitted in NSW and the High Court of Australia.

Margaret McGlynn

USA

Margaret (Margie) McGlynn is President of the Board of HCU Network America, a patient advocacy organization she co-founded to provide support for patients and families affected by homocystinuria.  She is also President of the Hempling Foundation for Homocystinuria Research, a fund she established to support research on new therapies for HCU in honor of her late sisters, Judy and Susie Hempling. Judy and Susie passed away due to homocystinuria in the early 1970s and Margie is committed to finding a cure for homocystinuria so that someday no children will suffer like her sisters did, and no families will need to deal with the impact of this devastating illness on their family members or the fear of passing the disease along to additional offspring.

After receiving a BS in Pharmacy and an MBA in Marketing from The University at Buffalo, Margie spent 26 years at Merck where she served in leadership roles in marketing, new product development and managed care, last serving as President, Global Vaccines and Anti-Infectives. After retiring from Merck, Margie served for 4 years as President and Chief Executive Officer of the International AIDS Vaccine Initiative (IAVI), a Product Development Partnership which helps accelerate HIV vaccine development by bridging government and philanthropic funding with academic and industry vaccine research and development capabilities. Margie also serves on the boards of, Vertex Pharmaceuticals, Amicus Therapeutics, Orphan Technologies, and Air Products and Chemicals.

Prof. Matthias R. Baumgartner

Switzerland

Matthias Baumgartner studied Medicine at the University of Basel, Switzerland, where he earned his degree as a medical doctor in 1992. He then went on to do a postgraduate course in experimental medicine and biology at the University of Zurich followed by laboratory work at the Biocentre of the University of Basel. After completing his residency in pediatrics at the University Children’s Hospital Basel and at Hôpital Necker – Enfants Malades in Paris, Prof. Baumgartner continued his training in the United States, where he worked as postdoctoral und clinical fellow at the Mc Kusick-Nathans Institute of Genetic Medicine at Johns Hopkins University, Baltimore, from 1999-2001. He returned to Basel to lead the Metabolic Unit at the University Children’s Hospital. 2 years later Prof. Baumgartner joined the Division of Metabolism & Molecular Pediatrics at the University Children’s Hospital in Zurich. After his habilitation in 2005 he was elected as professor for metabolic diseases at the University of Zurich in 2008. Prof. Baumgartner is head of the Division for Metabolic Diseases und Medical Director of the Swiss Newborn Screening Program at the Kinderspital Zürich. Since 2012 he leads the clinical research priority program “Rare Disease Initiative Zurich – radiz” at the University of Zurich. Prof. Baumgartner is an internationally known metabolic paediatrician and scientist with a main research interest in disorders of intracellular cobalamin metabolism including the homocystinurias and methylmalonic acidurias; he is a  steering committee member of the European networks and registries for Homocystinurias and remethylation disorders (E-HOD, www.e-hod.org) and Intoxication type Metabolic Diseases (E-IMD, www.e-imd.org) and an editor of the Journal of Inherited Metabolic Disease.

Prof. Viktor Kožich

Czech Republic

Professor Kožich graduated from the School of General Medicine, Charles University in Prague in 1985. Since his graduation he has been working in the Institute of Inherited Metabolic Diseases and he specialized in clinical biochemistry and medical genetics, in 2012 he became the full Professor of Medical Genetics.

His main interests are genetic, biochemical, clinical, epidemiological and ethical aspects of inherited metabolic disorders with a special interest in disorders of homocysteine metabolism and namely in cystathionine beta-synthase deficiency—a disease in which he became interested  in 1991-1992 during his fellowship in the laboratory of Prof.Jan P.Kraus (University of Colorado School of Medicine in Denver, USA).  Prof.Kožich is also involved in organization of neonatal screening and serves as a Chairman of the national Coordination Center on Neonatal Screening in the Czech Republic.

Professor Kožich has been a tutor of graduate and postgraduate students, he is an author of over 100 publications in peer reviewed international journals, several chapters in books, and of articles and chapters in Czech medical literature; he has been an invited speaker at various international and national conferences. He is a member of councils of several international learned societies (SSIEM, ERNDIM, and ESHG) and he is active in peer review system at both the national and international levels.

Prof. Henk Blom

Netherlands

Henk Blom finished his Chemistry study in 1985 and received his PhD in 1988 at the Radboud University Nijmegen. After his post-doc period at the Human Genetics Branch, NIH, USA (William Gahl), he became post-doc in 1990 and later in 1992 staff member of the Clinical Genetics Center Nijmegen at Laboratory of Pediatrics and Neurology, University Hospital Nijmegen, the Netherlands. In 1997 he became Established Investigator of the Netherlands Heart Foundation and in 2003 he was registered as Clinical Biochemical Geneticist. In 2007 he was appointed as vice-head and later head of the Metabolic Unit at the Department Clinical Chemistry, VU University Medical Centre Amsterdam, the Netherlands and in 2009 he became Professor in Biochemistry of Inherited Metabolic Diseases at the VU University Medical Centre Amsterdam. Since 2014 he is head of the laboratory for Clinical Biochemistry and Metabolism, Department of General Pediatrics, Center for Pediatrics and Adolescent Medicine University Hospital Freiburg, Germany.

His research concerns inborn errors of metabolism with special focus on inherited defects of homocysteine, methylation and folate metabolism. His contributions include the association of a disturbed homocysteine metabolism with pregnancy complications, including neural tube defects, cardiovascular disease, thrombosis and stroke in children. He investigated the genetic etiology of thermolabile MTHFR, which resulted in the discovery of the MTHFR 677C>T variant which is the first identified genetic risk factor for neural tube defects.  Basic research concerned the effects of homocysteine and its metabolites on development of chicken embryos and endothelial function.

Among inborn errors of metabolism his group described the molecular basis of severe hyperhomocysteinemia. They also explored cystinosis and defects in the methionine methylation pathway, including methionine adenosyltransferase deficiency. They discovered two new genetic defects: one in folate metabolism: dihydrofolate reductase deficiency and one defect in methylation: adenosine kinase deficiency. Prof Henk Blom is coordinator of E-HOD, an international consortium on homocystinurias and methylation disorders. In 2017 the consortium consisted of almost 100 partners. Main achievements are the setup of the E-HOD registry (www.EHOD-registry.org) and website (www.E-HOD.org) with information for expert as well as patients and their families. In addition four guideline manuscripts have been published, teaching courses and Patient – Expert Meetings organized.

He supervised as (co)promoter of 31 PhD students and published over 350 papers in international journals resulting in an H-index of 72.

Prof. Bridget Wilcken

Australia

Professor Bridget Wilcken graduated in medicine from Edinburgh University. She has over 40 years’ experience in the investigation and treatment of patients with inborn errors of metabolism.  Until 2012 she was Clinical Director of the New South Wales Biochemical Genetics and Newborn Screening Services at the Children’s Hospital at Westmead, Sydney, and is currently a part-time metabolic physician at Sydney Children’s Hospital. Research has been mainly in the general area of newborn screening, especially screening for cystic fibrosis and expanded screening by tandem mass spectrometry. She is former President of the Human Genetics Society of Australasia, the International Society for Neonatal Screening (ISNS), and the Australasian Society for Inborn Errors of Metabolism. She has been awarded the Order of Australia and the Guthrie Medal of the ISNS for services to newborn screening.

Dr. Warren Kruger

USA

Dr. Warren Kruger graduated magna cum laude from Cornell, received his Ph.D in Biochemistry from the University of California, and was a Postdoctoral Fellow in the Department of Genetics at Stanford University.  He is currently a full professor in the Cancer Biology program at Fox Chase Cancer Center, where he has been since 1995.  His lab focuses on the study of sulfur amino acid metabolism and its relationship to human health and disease.   He has worked on CBS deficiency since 1992, where he showed that human CBS could functionally substitute for the yeast enzyme.  A key discovery made to Dr. Kruger was the finding that most patient-derived mutant CBS proteins have “cryptic” enzyme activity which can be uncovered by various genetic and pharmacologic manipulations.  Also, Dr. Kruger’s lab has created several different mouse models of CBS deficiency that are used widely in the field.  He has published more than 80 peer reviewed papers, been an invited speaker at numerous international conferences, and has obtained research grants from a wide variety of sources, including the National Institutes of Health, Department of Defense, American Cancer Society, and American Heart Association.

Soraia Poloni

Brazil

Soraia Poloni has a Bachelor’s in Nutrition from the Universidade Federal do Rio Grande do Sul, UFRGS, Porto Alegre, Brazil, a PhD in Genetics and Molecular Biology and is a researcher at Hospital de Clínicas de Porto Alegre in Brazil.

Since 2010, I have been developing my research in the field of homocysteine disorders, focusing on metabolic and genetic aspects of CBS deficiency. Our research developed at the Hospital de Clínicas de Porto Alegre (Brazil), provided the most wide-ranging clinical and genetic characterization of HCU patients in Brazil to date. Also, we described novel aspects of lipid metabolism in this disease. Our research center, headed by Prof Ida Schwartz, also participates of the EHOD registry and develops several research collaborations with the University of Freiburg (Prof. Henk Blom) in the study of homocystinurias and methylation defects.

Dr. Vania Almeida

Brazil

Graduate in Biological Sciences at Universidade Mackenzie (1984), Master in Biochemistry at Universidade Federal de São Paulo (1988) and PhD in Biochemistry at Universidade Federal de São Paulo (1993). Associate Professor at Universidade Federal de São Paulo and Coordinator of the Graduation Program in Psychobiology at UNIFESP. She has authored over 150 papers, supervised over 40 MSc and PhD. Has experience in Biochemistry and Genetics, mainly on the following subjects: homocysteine, oxidative stress, epigenetics, inborn errors of metabolism and lysosomal storage diseases.

Registration

Would you like to attend the Patient-Expert Meeting in Rio, Brazil on the 4th September? Register now to secure your place as numbers are limited.

Register Your Attendance Here:

Please RSVP by Friday, 28th July 2017. If capacity is reached before the closing date, all registrants will be added to a waitlist.



Please select a panel discussion.




General Information

The Venue

Windsor Convention & Expo Center

R. Martinho de Mesquita, 129 – Bloco 2 – Barra da Tijuca, Rio de Janeiro – RJ, 22620-220

For Google Maps, click here.

How to Arrive to Rio de Janeiro

Galeão – Tom Jobim International Airport (GIG)

Galeão International Airport is the main airport serving Rio. The airport is located 20km from the city center of Rio. There are several bus, taxi and transfer companies who provide airport shuttle services.

Santos Dumont Airport (SDU)

If you are travelling from or to another area within Brazil, Santos Airport is the domestic airport serving internal flights. The airport is located 2km from the city center of Rio. Bus, taxi and transfer companies provide airport shuffle services.

About Rio

Rio is one of Brazil’s most popular tourist destinations. The coastal city offers a vibrant culture and rich history. From football and beaches, to hiking and one of the Seven Wonders of the Modern World, Rio has something for everyone.

Some suggested places to visit in Rio:

  • Sugarloaf Mountain – Hike up the mountain to see breathtaking views of surrounding beaches.
  • Corcovado “Christ the Redeemer” – Visit one of the Seven Wonders of the Modern World.
  • Jardim Botanico – Visit the magnificent Botanical Garden and spend hours walking amongst exotic flowers and plants.
  • Maracana Stadium – The world’s largest football stadiym and the host to the opening and closing of the 2016 Olympic Games.
  • Copacabana Beach – Take a visit to this lively neighbourhood and beach.
  • Ipanema Beach – Considered one of the most expensive neighbourhoods to live in Rio.

Practical Information

Language: Basic English is widely spoken. The local language in Brazil is Portuguese. A large portion of the population understand Spanish well.
Time Zone: Rio follows the Brasilia time (UTC/GMT -3hours)
13 hours behind Melbourne, Sydney, Brisbane and Hobart (AEST)
12.5 hours behind Adelaide and Darwin (ACST)
11 hours behind Perth (AWST)
Weather: September is at the end of the Brazilian winter and the weather is beginning to get warmer. The average maximum temperature in September in Rio is 25 C and the average minimum is 19 C.
Dress code: The dress code for the meeting is casual or business casual as Rio is a very informal city.
Electricity: You will require a travel adapter for your electrical goods.
Telecommunications: The Country Code for Brazil is 55 and the area code for Rio is 21.
Currency: The Brazilian monetary unit is the Brazilian Real (BRL).
Credit Cards: Visa, MasterCard, Diners and American Express are accepted in most hotels, restaurants and shops.
Visas: Australian passport holders require a Visa to enter Brazil. Visa applications can take up to 15 business days to process so be sure to submit your application well before your departure date.
Taxis: Yellow Taxis roam the streets of Rio and are metered. Most hotels will also organise a special taxi service for airport and hotel transfers. Please note: not all taxis will take credit cards.
Tipping: Tips are optional but the usual recommendation is 10% of the bill in restaurants.
Emergency Numbers: Ambulance – 192
Fire Department – 193
Civil Defense – 199
Civil Police – 197
Federal Police – 194
Military Police – 190