LATAM Rare Diseases Forum

Hosted by Fundacion Bamberg

Event virtual

Research and Health Care Policies
Equity of access to treatment
Access to Orphan Drugs
Legislations, Regulations and Policies

It is well known that approximately 80% of rare diseases are caused by a genetic alteration. The development of omic sciences, and in particular the development of genomics, is making it possible to discover the molecular origin of many diseases and determine effective diagnostic tests.

In this forum we will discuss the opportunities provided by individualized medicine and gene therapy for the diagnosis and treatment of these diseases, as well as policies in research, health care and financing of therapies in Rare Diseases.

To enlighten ourselves and discuss it, we have convened a select group of geneticists, researchers and clinicians, with managers and politicians to discuss the issues raised and provide solutions and proposals for action to those who have the capacity to approve them and put them into operation.

Speakers


  • Marcelo Serra Hospital Italiano de Buenos Aires (Argentina)Director del Programa de Enfermedades Raras
    Medico Staff del Servicio de Clínica Medica del Hospital Italiano de Buenos Aires. Director del Programa de Enfermedades Raras. Director de la Unidad de HHT (Telangiectasia Hemorragica Hereditaria) y co-Director de la Unidad VHL.(von Hippel Lindau). Profesor Adjunto del Instituto Universitario Hospital Italiano y Docente Adscripto de la Universidad de Buenos Aires.
    Marcelo Serra Hospital Italiano de Buenos Aires (Argentina) Director del Programa de Enfermedades Raras
  • Giorgio FranyutiMedical IMPACT (México)Executive Director
    Giorgio Franyuti Medical IMPACT (México) Executive Director
  • Héctor ValleFundación Mexicana para la Salud (FunSalud)Presidente Ejecutivo
    Héctor Valle Fundación Mexicana para la Salud (FunSalud) Presidente Ejecutivo

Sponsors


Sessions Download agenda


  • 1 APERTURA: PRESENTACION E INTRODUCCION AL ACTO -
    0 speakers
    The expected duration is 30 minutes
    The language of this session is Spanish
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  • 2 PRESENTACIÓN DE LA INDUSTRIA: -
    0 speakers
    The expected duration is 30 minutes
    The language of this session is Spanish
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  • 3 1ª SESION: Financiación para la Investigación y Desarrollo -
    1 speakers
    • Marcelo Serra Hospital Italiano de Buenos Aires (Argentina)Director del Programa de Enfermedades Raras
      Medico Staff del Servicio de Clínica Medica del Hospital Italiano de Buenos Aires. Director del Programa de Enfermedades Raras. Director de la Unidad de HHT (Telangiectasia Hemorragica Hereditaria) y co-Director de la Unidad VHL.(von Hippel Lindau). Profesor Adjunto del Instituto Universitario Hospital Italiano y Docente Adscripto de la Universidad de Buenos Aires.
      Marcelo Serra Hospital Italiano de Buenos Aires (Argentina) Director del Programa de Enfermedades Raras
    The expected duration is 1 hour
    The language of this session is Spanish
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  • 4 PRESENTACIÓN DE LA INDUSTRIA: -
    0 speakers
    The expected duration is 30 minutes
    The language of this session is Spanish
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  • 5 2ª SESION: Equidad y Accesibilidad a Medicamentos Hérfanos -
    2 speakers
    • Giorgio FranyutiMedical IMPACT (México)Executive Director
      Giorgio Franyuti Medical IMPACT (México) Executive Director
    • Héctor ValleFundación Mexicana para la Salud (FunSalud)Presidente Ejecutivo
      Héctor Valle Fundación Mexicana para la Salud (FunSalud) Presidente Ejecutivo
    The expected duration is 3 months and 23 hours
    The language of this session is Spanish
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  • 6 CLAUSURA -
    0 speakers
    The expected duration is 15 minutes
    The language of this session is Spanish
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Target Audience


  • Heads of Hospital Pharmacy
    30%
  • Drug Regulatory Agencies
    25%
  • Research Institutes
    15%
  • Government Officials
    15%
  • Pharmaceutical industry
    15%

Event attendees


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