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

Click on lecture titles for more details.

All events are at the Cojimar Conference Centre apart from the Concert on Saturday evening.

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

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

08.00 – 08.30
Registration

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

Moderator: Suzanne Cassidy, University of California, San Francisco

Jim Resnick, University of Florida College of Medicine
The Zafgen lecture

10.00 – 10.30
Break

Moderator: Urs Eiholzer, Center for Pediatric Endocrinology Zurich

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

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

12.00 – 13.00
Lunch and poster viewing

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

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

14.30 – 15.00
Break

Moderator: Charlotte Höybye, Karolinska University Hospital and Karolinska Institute

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

Jude P. Crino, University of Maryland School of Medicine

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

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

Raiza Parés Ojeda, University of Ciego de Avila, Cuba

Craig Moore, Interaction, Australia and Neil Gumley, Service Manager, Melbourne, Australia

Jorgelina Stegmann, SPINE Foundation, Argentina

Laura Keane, Resilience Care, Ireland

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

10.00 – 10.30
Break
10.30 – 12.00
Session 2: Early Intervention

Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof , Germany

Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof , Germany

Constanze Lämmer, Children’s Hospital St. Bernward, Germany

Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof, Germany

Constanze Lämmer, Children’s Hospital St. Bernward, Germany

12.00 – 13.00
Lunch
13.00 – 14.30
Session 3: PWS and Aging

Larry Genstil, Genstil Institute of Human Behaviour, Israel

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

Damien Jones, Interaction, Australia

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

Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof, Germany

Tony Holland, University of Cambridge, UK

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

Michael Pethe, Deputy Home Director, Switzerland

Registration
08.00 – 08.30

Moderator: Ann Scheimann, Johns Hopkins School of Medicine

Harold J. P. van Bosse, Shriners Hospital for Children

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

10.00 – 10.30
Break

Moderator: Tony Holland, University of Cambridge

Nathalie Kayadjanian, PWS Clinical Trial Consortium

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

12.00 - 13.00
Lunch and poster viewing

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

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

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

14.30 – 15.00
Break

Moderator: Janice L. Forster, Pittsburgh Partnership

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

Marguerite Hughes, Vice-President, IPWSO

Natasa Momcilovic, Maudsley Hospital, London, UK

Constanze Lämmer, Children’s Hospital St. Bernward, Germany

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

10.00 – 10.30
Break
10.30 – 11.15
Session 6: Teachers’ world

Larry Genstil, Genstil Institute of Human Behaviour, Israel

11.15 – 12.00
Session 7: Neuropsychology in PWS

Hubert Soyer, Regens Wagner Absberg, Germany
Svetlana Labun, Regens Wagner Absberg, Germany

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

Tony Holland, University of Cambridge, UK

Nathalie Kayadjanian, Foundation for Prader-Willi Research, USA

Laura de Graaff, Erasmus MC Rotterdam and Dutch Center of Reference for Prader-Willi Syndrome

14.30 – 15.00
Break
15.00 – 16.45
Session 9: New Developments

Laura Keane, Resilience Care, Ireland

Michael Pethe, Deputy Home Director, Switzerland

Stefan Pimmingstorfer, Caritas für Menschen mit Behinderungen/ Caritas Upper Austria

Karin Birkedal, Bostedet Solvang ApS, Denmark
Trine Jensen, Bostedet Solvang ApS, Denmark
Christina Brydegaard, Bostedet Solvang ApS, Denmark

Maria Pedersen, Karolinska University Hospital, Sweden

Norbert Hödebeck-Stuntebeck, Diakonische Stiftung Wittekindshof

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

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.

08.30 – 09.00
Registration

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

Dan Driscoll, MD, University of Florida College of Medicine, USA

Jennifer Miller, MD, University of Florida, USA

10.30 – 11.00
Break

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

Linda Gourash, MD, Pittsburgh Partnership, USA

12.30 – 13.30
Lunch

Chair: Verena Gutmann, Board member of IPWSO, Austria

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

Chair: Verena Gutmann, Board member of IPWSO, Austria

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

Chair: Georgina Loughnan, Board member of IPWSO, Australia

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

14.30 – 15.00
Break

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

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

Chair: Marguerite Hughes, Vice-President of IPWSO, Ireland

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

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

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.

08.00 - 08.30
Registration

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

10.00 – 10.30
Break

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

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

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

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

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

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

12.30 – 13.30
Lunch

Chair: Tony Holland, President of IPWSO

Sensory Integration: Janice Forster, Pittsburgh Partnership, USA

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

Delivered in Spanish (with English translation)

14.30 – 15.00
Break

Chair: Georgina Loughnan, Board member of IPWSO, Australia

Speaker: Elizabeth Roof, Vanderbilt University, USA

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

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

Chair: Amalia Balart, Board member of IPWSO, Chile

Speaker: Verena Gutmann, Educational Head of Department, Austria

Chair: Amalia Balart with a panel of speakers

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

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

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

    Maïthé Tauber, MD

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

      Susanne Blichfeldt, MD

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

        Janice Forster, MD

        Pittsburgh Partnership, USA

          Charlotte Höybye, MD

          Karolinska University Hospital and Karolinska Institute, Sweden

            Nathalie Kayadjanian, PhD

            Foundation for Prader-Willi Research, USA

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