About

Huntington’s Disease in Latin America

Families affected by Huntington’s disease (HD) in Latin America suffer HD in very difficult conditions. Many of them live in impoverished areas where medical care is absent and access to resources is very limited. The highest density of HD patients worldwide exists in several small ‘clusters’ throughout Latin America, and many live in extreme poverty. One single action that will benefit them is a concerted effort of local communities and institutions with support from national and international colleagues working to improve the lives of HD patients through scientific, medical and humanitarian approaches.

The Latin American HD Meeting (LAHD2018) aims to bring together HD patients and people at risk, caretakers, healthcare personnel, physicians, scientists, social organizations, academic and governmental institutions working to improve HD families’ quality of life in the Latin American region. In that broad sense, this is not a scientific meeting; it is an event with medical, scientific, social and humanitarian purposes.

The idea of the LAHD2018 was born out of recognition that more effective interactions between scientists, clinicians and the patients and their families is crucial for advancing and accelerating the translation of research from the bench to clinical practices and novel therapies.  This is not only important for ensuring patient participation in clinical trials and public support of research, but also because such interactions are important for improving our understanding of the complexity of HD and could inform and inspire new/future research directions and priorities that are aligned with patient’s needs.

In addition to sharing your expertise and ideas on the latest medical and scientific advances, we are convinced that your participation will not only contribute to improving the daily life of the HD patients and their families, but also contribute to developing a patient-centered approach to advancing research and therapies for Huntington’s disease.

Why you should participate?

  • Nobody knows Huntington’s disease better than the patients themselves
  • Meet and Interact with HD patients and their families to and discover the human side of HD
  • Get a firsthand experience about how your work can make a difference in the lives of HD patients and their families
  • Contribute to increasing awareness about HD and contribute to making HD research more people/patient-centered
  • Inspire and be inspired by the patients

Confirmed speakers

Ignacio Muñoz-Sanjuán
USA

Vice President, Biology
CHDI Foundation/CHDI Management, Inc.

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Ignacio Muñoz-Sanjuán
USA
Hilal A. Lashuel
Switzerland

École polytechnique fédérale de Lausanne

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Hilal A. Lashuel
Switzerland
Diego Rosselli
Colombia

Colombia

Diego Rosselli
Colombia
Daniel Ciriano
Argentina

Regional Medical Director – LATAM

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Daniel Ciriano
Argentina
Pedro Chana
Chile

CETRAM

Pedro Chana
Chile
Marina Gonzalez
Venezuela

University of Zulia

Marina Gonzalez
Venezuela
Vittorio Maglione
Italy

Neuromed

Vittorio Maglione
Italy
Roger Cachope
USA

CHDI Foundation/CHDI Management, Inc.

Roger Cachope
USA
Claudia Perandones
Argentina

Argentina NIH

Claudia Perandones
Argentina
Gustavo Barrios
Colombia

Colombia

Gustavo Barrios
Colombia
Daniela Albuquerque
Chile

Cetram

Daniela Albuquerque
Chile
Lennie Pineda
Venezuela

University Zulia

Lennie Pineda
Venezuela
Olga Lucia Parga
USA

USC/Kihmi

Olga Lucia Parga
USA
Alba Di Pardo
Italy

Centre for Neurogenetics and Rare Diseases

Alba Di Pardo
Italy
Vahri Beaumont
USA

Director of Neurobiology, CHDI Foundation

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Vahri Beaumont
USA
Ali Khoshnan
USA

CalTech

Ali Khoshnan
USA
G. Bernhard Landwehrmeyer
Germany

Ulm University
Department of Neurology

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G. Bernhard Landwehrmeyer
Germany
Mariela Campo
Colombia

Funcovulc

Mariela Campo
Colombia
Gorette Nunes Marques
Brazil

Brazilian association

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Gorette Nunes Marques
Brazil
Anna Rita Bentivoglio
Italy

Policlinico Agostino Gemelli University Hospital

Anna Rita Bentivoglio
Italy
Zoe Cruz
Puerto Rico

InterAmerican University

Zoe Cruz
Puerto Rico
Elena Cattaneo
Italy

University of Milan

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Elena Cattaneo
Italy
Peter McColgan
UK

NIHR Clinical Lecturer
UCL Huntington's Disease Centre

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Peter McColgan
UK
Roberto Weiser
Venezuela

Aruba/Caracas

Roberto Weiser
Venezuela
Saul Martinez
Spain

Sant Pau Hospital

Saul Martinez
Spain
Sonia Moreno
Colombia

Factor-H

Sonia Moreno
Colombia
Esther Rosa Candela
Peru

Founder of the NGO :
Organización Internacional de Trabajadores Sociales

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Esther Rosa Candela
Peru

Organizing committee

Hilal A. Lashuel
Switzerland

École polytechnique fédérale de Lausanne

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Hilal A. Lashuel
Switzerland
Gustavo Barrios
Colombia

Bogota

Gustavo Barrios
Colombia
Ignacio Muñoz-Sanjuán
USA

Vice President, Biology
CHDI Foundation/CHDI Management, Inc.

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Ignacio Muñoz-Sanjuán
USA
Roger Cachope
USA

CHDI Foundation & Factor-H

Roger Cachope
USA
Elena Cattaneo
Italy

University of Milan

Elena Cattaneo
Italy
Jimmy Crump
Colombia

Neurólogo

Jimmy Crump
Colombia

Program

The program will include updates from leading scientists, clinicians and representatives from the pharmaceutical industry on the latest advances in HD research, medical practices and disease management strategies as well interactive discussions and activities with HD patients and their families.

Morning sessions

7:00am – 8:00am

8:15am – 8:30am

Ignacio Muñoz-Sanjuán, PhD
Founder Factor-H; CHDI Foundation, USA

Introducción a la enfermedad de Huntington en Latinoamérica

Claudia Perandones, MD
Director, National Institutes of Health, Argentina
Director, Enroll-HD in Latin America

Biología de EH en neuronas derivadas de células pluripotenciales humanas

Elena Cattaneo, PhD
University of Milan, Italy

Hilal Lashuel, PhD
École Polytechnique Fédérale de Lausanne (EPFL), Switzerland

10:00am – 10:15am

Patofisiología de la enfermedad de Huntington

Vahri Beaumont, PhD
CHDI Foundation, USA

Los primeros cambios cerebrales en la EH

Peter McColgan, PhD
UCL

Efectos del microbioma en EH y neurodegeneración

Ali Khoshnan, PhD
California Institute of Technology

Historia de la Enfermedad de Huntington en Colombia

Diego Roselli, MD MS
Xaverian Pontifical University, Colombia

Video – audiencia de pacientes latinoamericanos con el Papa Francisco

Charles Sabine / Ignacio Muñoz-Sanjuán
HDdennomore/Factor-H

Lunch

12:45pm – 2:00pm

Afternoon sessions

Historia y realidad de las familias venezolanas con la enfermedad de Huntington

Lennie Pineda, MS
Zulia University, Venezuela

Impacto de Funcovulc en la identificación de pacientes con la enfermedad de Huntington en el caribe colombiano.

Mariela Oviedo, Social worker
FUNCOVULC Foundation, Colombia

Intervención social en las familias Huntintón Cañete - Perú

Esther Rosa Candela, Social worker
HD Association Peru

3:30pm – 4:00pm

Los clusters de EH en Brasil

Gorette Nunes Marques
ABH Association Huntington Brazil

4:00pm – 4:15pm

4:15pm – 5:45pm

Major needs for the clusters and discussion with the scientists/clinicians.

Morning sessions

8:00am – 8:30am

Aspectos genéticos de la EH

Alba Di Pardo/Vittorio Maglione
Instituto Neurologico Mediterraneo Neuromed, Italy

Panorama de la Enfermedad de Huntington en la Costa Caribe Colombiana

Gustavo Barrios, MD MS
Kennedy Hospital, Colombia

EH en Chile, la experiencia del CETRAM

Pedro Chana, MD

Tratamientos sintomáticos para la EH

Roberto Weiser. MD
Neurologist, Venezuela

10:00am – 10:15am

Aspectos cognitivos y conductuales en la enfermedad de Huntington: ¿Qué es necesario saber?

Saúl Martínez, MD
HD European Group; Santa Creu i Sant Pau Hospital, España

Biomarcadores para estudios clínicos de terapia génica

Roger Cachope, MD MS
Factor-H; CHDI Foundation, USA

Estudios clínicos en EH

Bernhard Landwehrmeyer, MD
Enroll-HD; University of Ulm, Germany

11:45am – 12:15pm

Resultados de los estudios clínicos de los ASO

TBD (not confirmed yet)
Roche

Lunch

12:15pm – 2:00pm

Afternoon sessions

Estrategias para afrontar las condiciones de vulnerabilidad psicosocial en familias con enfermedad de Huntington

Sonia Moreno, PsyD PhD
Universidad de Antioquia, Colombia

Centro de dia y noche del CETRAM

Daniela Albuquerque
CETRAM, Chile

Visión de desarrollo autosostenible en las comunidades de Maracaibo

Marina González
Habitat Luz Foundation, Venezuela

KIHMI, una aproximación innovadora al bienestar en comunidades afectadas por EH

Olga Lucía Parga
University of Southern California, USA

4:00pm – 4:15pm

Aspectos cognitivos y conductuales en la enfermedad de Huntington: ¿Qué es necesario saber?

How can we work as a community to address needs of impoverished communities affected by HD?

5:45pm – 6:00pm

Our sponsors

Registration

Click on the following button to register to the conference

Practical informations

Check out the FAQs to find the answers to common questions. Can't find your question answered here? Contact us.

Booking a room

You can book a room at the Hilton Hotel by clicking on the following link :

For any travel arrangements please contact :

Jean Rodríguez 

Asesor de servicios turísticos – Munditur SAS

Calle 76 # 54- 11. Oficina 901

Edificio World Trade Center

Tel: (+575) 3680880 Ext: 20

Cel: +57 310 362 7013 – +57 310 610 6593

Skype: cotizacionesmunditur

When will the conference take place ?

The conference will take place from 7th to 9th of July, 2018.

Where will the conference take place ?

The conference will take place at the Hotel Hilton Garden Inn, Barraquilla, Colombia.

Will I be able to connect to the internet ?

Wireless internet access will be granted to the symposium participants: please ask for details at the welcome desk.

Event location

Here, you will find directions to the conference venue. More space to meet and network!

VISIT US

Hotel Hilton Garden Inn
Barraquilla
Colombia

EMAIL US

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CALL US

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