Welcome Delegates

13 to 17 November 2019, Havava , Cuba

The International Prader-Willi Syndrome Organisation (IPWSO) is delighted to invite delegates from around the world to attend our 10th international conference. Featuring a selection of high profile keynote speakers and new research and best practice in care, delegates will learn about the latest developments in the care, treatment and management of PWS. Our conference is a multi-disciplinary event which will bring together scientists, doctors, care providers, people with PWS and their families and carers to share expertise and experiences and celebrate our international PWS community.

The 10th International conference of the International Prader-Willi Syndrome Organisation will take place in 2019 in Havana, Cuba. The local hosts for the event are the Cuban Society of Human Genetics (SOCUGEN).

The International Prader-Willi Syndrome Organisation (IPWSO) is delighted to invite delegates from around the world to attend our 10th international conference. Featuring a selection of high profile keynote speakers and new research and best practice in care, delegates will learn about the latest developments in the care, treatment and management of PWS. Our conference is a multi-disciplinary event which will bring together scientists, doctors, care providers, people with PWS and their families and carers to share expertise and experiences and celebrate our international PWS community.

The 10th International conference of the International Prader-Willi Syndrome Organisation will take place in 2019 in Havana, Cuba. The local hosts for the event are the Cuban Society of Human Genetics (SOCUGEN).

Schedule

Highly configurable block with optional auditoriums and threads

(English) 13.00 - 14.00
(English) Lunch
(English) 14.00 - 17.00
(English) Roundtable on Gonadal function - The Theatre
(English) 16.00 - 18.00
(English) Registration opens

(English) Join us for a welcome cocktail and to meet the other delegates.

(English) 08.00 – 08.30
(English) Registration

(English) Chair: Daniel J. Driscoll, University of Florida College of Medicine
Co-Chair: Estela Morales Peralta, Medical University of Havana

(English) Moderator: Suzanne Cassidy, University of California, San Francisco

(English) Jim Resnick, University of Florida College of Medicine
The Zafgen lecture

(English) 10.00 – 10.30
(English) Break

(English) Moderator: Urs Eiholzer, Center for Pediatric Endocrinology Zurich

(English) Maïthé Tauber, Université Paul Sabatier Toulouse 3 and Hôpital des enfants CHU

(English) Charlotte Höybye, Karolinska University Hospital and Karolinska Institute
The Levo Therapeutics lecture

(English) 12.00 – 13.00
(English) Lunch and poster viewing

(English) Moderator: Maïthé Tauber, Université Paul Sabatier Toulouse 3 and Hôpital des enfants CHU

(English) Amanda Hor, Garvan Institute of Medical Research, St Vincent’s Hospital and University of New South Wales

(English) 14.30 – 15.00
(English) Break

(English) Moderator: Charlotte Höybye, Karolinska University Hospital and Karolinska Institute

(English) Susanne Blichfeldt, The Danish Prader Willi Association and Centre for Rare Diseases

(English) 17.00 – 18.00
(English) Poster presentations, session #1
(English) 08.00 – 08.30
(English) Registration
(English) 08.30 – 10.00
(English) Session 1: Opening and overview about special provisions and services for PWS in different countries

(English) Norbert Hödebeck-Stuntebeck, Chair of the Professional Providers and Caregivers Board of IPWSO, Diakonische Stiftung Wittekindshof and Prader-Willi Syndrome Institute Germany
Tony Holland, IPWSO President and University of Cambridge, UK
Raiza Parés Ojeda, University of Ciego de Avila, Cuba

(English) Raiza Parés Ojeda, University of Ciego de Avila, Cuba

(English) Craig Moore, Interaction, Australia and Neil Gumley, Service Manager, Melbourne, Australia

(English) Jorgelina Stegmann, SPINE Foundation, Argentina

(English) Laura Keane, Resilience Care, Ireland

(English) Yoshiro Kato, Kansai University of Welfare Sciences, Japan
Takayuki Kido, “ikiiki” non-profit organisation, Japan
Yasunobu Yamada, Residential Rehabilitation Institution “Teran Hiroba”, Social Service Organisation “Doyukai” , Japan

(English) 10.00 – 10.30
(English) Break
(English) 10.30 – 12.00
(English) Session 2: Early Intervention

(English) Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof , Germany

(English) Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof , Germany

(English) Constanze Lämmer, Children’s Hospital St. Bernward, Germany

(English) Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof, Germany

(English) Constanze Lämmer, Children’s Hospital St. Bernward, Germany

(English) 12.00 – 13.00
(English) Lunch
(English) 13.00 – 14.30
(English) Session 3: PWS and Aging

(English) Larry Genstil, Genstil Institute of Human Behaviour, Israel

(English) Larry Genstil, Genstil Institute of Human Behaviour, Israel
Damien Jones, Interaction, Australia

(English) Damien Jones, Interaction, Australia

(English) 14.30 – 15.00
(English) Break
(English) 15.00 – 17.00
(English) Session 4: Handling crisis situations and challenging behaviour

(English) Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof, Germany

(English) Tony Holland, University of Cambridge, UK

(English) Svetlana Labun, Regens Wagner Absberg, Germany
Norbert Hödebeck-Stuntebeck , Diakonische Stiftung Wittekindshof, Germany

(English) Michael Pethe, Deputy Home Director, Switzerland

(English) Registration
(English) 08.00 – 08.30

(English) Moderator: Ann Scheimann, Johns Hopkins School of Medicine

(English) Antonino Crinò, Bambino Gesù Children’s Hospital, Research Institute, Palidoro (Rome)

(English) 10.00 – 10.30
(English) Break

(English) Moderator: Tony Holland, University of Cambridge

(English) Nathalie Kayadjanian, PWS Clinical Trial Consortium

(English) Sophie Çabal-Berthoumieu, Centre de Référence du Syndrome de Prader-Willi and Hôpital des Enfants, Toulouse

(English) 12.00 - 13.00
(English) Lunch and poster viewing

(English) Moderator: Susanne Blichfeldt, The Danish Prader Willi Association and Centre for Rare Diseases

(English) Anita Hokken-Koelega, Dutch Growth Research Foundation and Erasmus University Medical Centre/Sophia Children’s Hospital

(English) Estela García-Alcaraz, University of Ottawa and Juana Muñoz-Liceras, University of Ottawa and Universidad Nebrija, Madrid

(English) 14.30 – 15.00
(English) Break

(English) Moderator: Janice L. Forster, Pittsburgh Partnership

(English) 16.00 – 18.00
(English) Poster presentations, session #2
(English) 08.00 – 08.30
(English) Registration
(English) 08.30 – 10.00
(English) Session 5: People with PWS at home - Family support

(English) Marguerite Hughes, Vice-President, IPWSO

(English) Constanze Lämmer, Children’s Hospital St. Bernward, Germany

(English) Georgina Loughnan, Prader-Willi Syndrome Clinic, Royal Prince Alfred Hospital, Australia

(English) 10.00 – 10.30
(English) Break
(English) 10.30 – 11.15
(English) Session 6: Teachers’ world

(English) Larry Genstil, Genstil Institute of Human Behaviour, Israel

(English) 11.15 – 12.00
(English) Session 7: Neuropsychology in PWS

(English) Hubert Soyer, Regens Wagner Absberg, Germany
Svetlana Labun, Regens Wagner Absberg, Germany

(English) Lunch
(English) 12.00 – 13.00
(English) 12.30 – 13.00
(English) Poster presentations
(English) 13.00 – 14.30
(English) Session 8: Science and Research

(English) Tony Holland, University of Cambridge, UK

(English) Nathalie Kayadjanian, Foundation for Prader-Willi Research, USA

(English) 14.30 – 15.00
(English) Break
(English) 15.00 – 16.45
(English) Session 9: New Developments

(English) Michael Pethe, Deputy Home Director, Switzerland

(English) Stefan Pimmingstorfer, Caritas für Menschen mit Behinderungen/ Caritas Upper Austria

(English) Karin Birkedal, Bostedet Solvang ApS, Denmark
Trine Jensen, Bostedet Solvang ApS, Denmark
Christina Brydegaard, Bostedet Solvang ApS, Denmark

(English) Maria Pedersen, Karolinska University Hospital, Sweden

(English) Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof

(English) 18.30 onwards
(English) Millendo Therapeutics Gala - Sala Polivalente, Cojimar Conference Centre

(English) Entertainment will be provided by a traditional Cuban music group.

Buffet food and drinks served.

This is a ticketed event, please buy your ticket through the online registration.

(English) 08.30 – 09.00
(English) Registration

(English) Opening from the Chair: Amalia Balart, Conference chair and Board member of IPWSO, Chile
Tony Holland, President of IPWSO, University of Cambridge, UK

Welcome from our local organisers: Loisel Bello Ulloa and Marlen Román García and their daughter

(English) Dan Driscoll, MD, University of Florida College of Medicine, USA

(English) Jennifer Miller, MD, University of Florida, USA

(English) 10.30 – 11.00
(English) Break

(English) Chair: James O’Brien, Board member of IPWSO, Australia

Living with PWS / Parents and people with PWS:

Amalia Balart, Board member of IPWSO, Chile, Board Member of PWS Association in Chile, Master in Special Education for learning disabilities.

Verena Gutmann, Educational Head of Department, Austria

(English) Linda Gourash, MD, Pittsburgh Partnership, USA

(English) 12.30 – 13.30
(English) Lunch

(English) Chair: Verena Gutmann, Board member of IPWSO, Austria

Orthopaedic Issues: Harold van Bosse, MD, Shriners Hospital for Children, USA

(English) Chair: Verena Gutmann, Board member of IPWSO, Austria

Children 0 to 18yrs: Constanze Lämmer, Children’s Hospital St. Bernward, Germany

(English) Chair: Georgina Loughnan, Board member of IPWSO, Australia

Adolescents and adults: Charlotte Höybye, Karolinska University Hospital and Karolinska Institute, Sweden

(English) 14.30 – 15.00
(English) Break

(English) Chair: Verena Gutmann, Board member of IPWSO, Austria

Healthy start to life:

Nutrition: Paulina Bravo, Clinica Santa Maria and Universidad de los Andes, Chile

Physical activity: Daniela Rubin, California State University, Fullerton, USA

(English) Chair: Georgina Loughnan, Board member of IPWSO, Australia

Healthy maturation and lifestyle:

Physical activity: Daniela Rubin, California State University, Fullerton, USA

Nutrition: Paulina Bravo, Clinica Santa Maria and Universidad de los Andes, Chile

Healthy ageing: Susanne Blichfeldt, The Danish Prader Willi Association and Centre for Rare Diseases, Denmark

(English) Chair: Marguerite Hughes, Vice-President of IPWSO, Ireland

Current research and clinical trials in PWS: Jennifer Miller, University of Florida, USA

(English) All day - timings will be confirmed with families
(English) Activities for People with PWS
(English) 19.00 onwards
(English) The Concert - venue tbc

(English) Entertainment by «La Colmenita”, a beautiful Cuban children’s theatre, music and dance company. They will perform a version of a popular Cuban children’s story called «La cucarachita Martina» in two languages (Spanish and English).

Giorgio Fornasier together with one of the members of the company will play the piano.

Food is not provided at this event so we recommend you plan to eat before or afterwards.

(English) 08.00 - 08.30
(English) Registration

(English) Chair: Marguerite Hughes, Vice-President of IPWSO, Ireland

Is it behaviour or a mental health problem?
Tony Holland, University of Cambridge, UK and Janice Forster, Pittsburgh Partnership, USA

Lecture then workshops

(English) Chair: Marilyn Dumont-Driscoll, Board member of IPWSO, USA

Developing psychological support strategies to help people with PWS deal with change: Kate Woodcock, University of Birmingham, UK

(English) Room 1 – The Theatre – Children 0 to 16yrs

Chair: Marilyn Dumont-Driscoll, Board member of IPWSO, USA

Early education and school years: Elizabeth Roof, Vanderbilt University, USA

(English) Chair: James O’Brien, Board member of IPWSO, Australia

Adulthood – work/day program/residential: Hubert Soyer, Regens Wagner Absberg, Germany

(English) Chair: Marilyn Dumont-Driscoll, Board member of IPWSO, USA

About IPWSO Country Organisations – getting started: Amalia Balart, Board member of IPWSO, Chile

(English) 12.30 – 13.30
(English) Lunch

(English) Chair: Tony Holland, President of IPWSO

Sensory Integration: Janice Forster, Pittsburgh Partnership, USA

(English) Maria Elvira Garcia, Author of The Thief of Smiles and President of the Colombian PWS Association

Delivered in Spanish (with English translation)

(English) 14.30 – 15.00
(English) Break

(English) Chair: Georgina Loughnan, Board member of IPWSO, Australia

Speaker: Elizabeth Roof, Vanderbilt University, USA

(English) Chair: James O’Brien, Board member of IPWSO, Australia

Speaker: Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof, Germany

(English) Chair: Amalia Balart, Board member of IPWSO, Chile

Speaker: Verena Gutmann, Educational Head of Department, Austria

(English) Chair: Amalia Balart with a panel of speakers

(English) Chair: Amalia Balart, Conference chair and Board member of IPWSO, Chile

Speakers: Tony Holland, President of IPWSO and Loisel Bello Ulloa, Representative of Cuban families with PWS

(English) All day - timings will be confirmed with families
(English) Activities for People with PWS
(English) 17.00 - 19.00
(English) General Assembly of IPWSO - The Theatre

(English) This will include the election of new board members as well as the selection of the venue for our next conference.

All welcome!

Agenda to be published in October.

Our speakers

Meet our speakers!

Dan Driscoll, MD, PhD

University of Florida College of Medicine, USA

    (English) Maïthé Tauber, MD

    Pediatrician and Professor of Pediatrics, Hôpital des Enfants and Paul Sabatier Université, Toulouse, France

      (English) Susanne Blichfeldt, MD

      The Danish Prader Willi Association and Centre for Rare Diseases, Denmark

        (English) Janice Forster, MD

        Pittsburgh Partnership, USA

          (English) Charlotte Höybye, MD

          Karolinska University Hospital and Karolinska Institute, Sweden

            (English) Nathalie Kayadjanian, PhD

            Foundation for Prader-Willi Research, USA

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              10th International conference of the International Prader-Willi Syndrome Organisation