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  6.  » About the IPWSO Leadership ECHO® Programme

The IPWSO Leadership ECHO® Programme

The Leadership ECHO® programme explores how we can make changes in our respective countries and influence governments so that the necessary services and supports are put in place for the benefits of people with PWS.

The goal of the IPWSO Leadership ECHO programme is to bring together people who are active in existing associations and others who are starting on the journey to establish groups or associations within their country. We believe that strong national PWS bodies can play an important role in collectively working to solve problems and can help to address disparities in services and supports, for the benefit of people with PWS, their families and carers.

Benefits of joining the IPWSO ECHO leadership community:

  • Supporting you in your ambition to improve care and life opportunities for families and individuals with PWS in your country, whether you are an individual or a national PWS Association.
  • Increasing your knowledge and understanding of PWS and sharing international best practice, latest research, resources and guidance.
  • Facilitating your access to PWS communities across the globe.
  • Creating a united global voice, empowering you to help to reduce disparities in the management, treatment, and provision of services for people with PWS in your country.

Presentations

Professor Nick Finer, UCL

“Virtual clinics in the COVID-19 era and beyond”

More about this presentation

In this Session, Tony asks the question about how we as leaders in PWS in our countries might help develop the services and supports that are needed to prevent, detect, manage and treat people with this syndrome.  Some countries have well developed systems, others less so. However, by sharing experiences through the IPWSO ECHO® Leadership Sessions we can all learn from each other and help map a way forward.   

Essential components are explored including accessing to knowledge for health professionals, educationalists, parents and the wider community, access to guidance to enable understanding, and access to professional support.

Tony poses some questions that we might ask of our decision makers, such as whether a “Rare Diseases Plan” exists – an expectation of the World Health Organisation for all governments – and, if that plan does exist, does it recognise PWS?

Susanne Blichfeldt M.D, Denmark 

“Supporting Young Children with Prader-Willi syndrome and their Families”

More about this presentation

In this ECHO® Leadership Session Susanne Blichfeldt, neuropaediatrician and parent of an adult with PWS, focuses on how best to support a child with PWS in the family and wider community.  Susanne highlights the importance of effective communication with siblings, grandparents, neighbours, educationalists, clinicians and allied professionals.  The “gift of play” is emphasised and the pleasure of watching the child develop, seeing the child happy and healthy in a supportive family environment, and the satisfaction of knowing that carers are doing their best, is all achievable once there is agreement to the strict adherence of ground rules.

The “Challenges” presented by representatives from Spain and Romania reflected the difficulties faced by new parents and families after a diagnosis of PWS and illustrated how, even within countries, equality of access to treatments and social and financial support varies.  This is a common experience across countries; participants discussed the need to develop “Best Practice Guidelines” as a starting point in any campaign to influence change.

Lynn Garrick
Programme Director for AME Community Services, Minnesota, USA

“Meaningful Work for people with PWS”

More about this presentation

Lynn reflected on her attendance at an IPWSO Conference in Germany and how she and colleagues were inspired to establish the ‘Harmony Farm and Garden’ which provides meaningful work for adults with PWS in Minnesota.

The subsequent discussion and challenges provided some useful insights into other countries and their approach; François Besnier, PWS, emphasises the need for social inclusion in his report.

Georgina Loughnan
Prader-Willi syndrome Specialist Clinic, Metabolism and Obesity Services

“Integrated Clinical Care for People with PWS”

More about this presentation

Georgina reflects on her 30-year career working with people with PWS and how she and others set about establishing an integrated clinical care facility – the PWS Specialist Clinic, Metabolism and Obesity Services – at the Royal Alfred Hospital, New South Wales, Australia. 

This is more than just a clinic; it is a centre for developing expertise, research and training, a knowledge hub – providing guidance to other medical specialism on the management and treatment of people with PWS –  a provider of holistic care, and moreover, for people with PWS and their families, it is the go-to place in times of difficulty. 

“Take me to the Royal Alfred – they understand me!”

Georgina provides us with insight into a model that may work in your country and advocates not to be deterred by a lack of funding or setbacks. Start small, find a willing doctor or clinician and build their expertise, knowledge and service, by encouraging others to use the same professionals.

More about this presentation

In this session Professor Nick Finer explores how technology can be used to good effect in the delivery of healthcare through virtual online clinics and how COVID-19 has accelerated the need for new ways of thinking about practices.

This is especially relevant when we consider rare diseases and how we, as leaders in PWS, might harness the opportunities and address the challenges presented in this fast-changing environment for the benefit of people with PWS.

More about this presentation

In this ECHO® Leadership Session Susanne Blichfeldt, neuropaediatrician and parent of an adult with PWS, focuses on how best to support a child with PWS in the family and wider community.  Susanne highlights the importance of effective communication with siblings, grandparents, neighbours, educationalists, clinicians and allied professionals.  The “gift of play” is emphasised and the pleasure of watching the child develop, seeing the child happy and healthy in a supportive family environment, and the satisfaction of knowing that carers are doing their best, is all achievable once there is agreement to the strict adherence of ground rules.

The “Challenges” presented by representatives from Spain and Romania reflected the difficulties faced by new parents and families after a diagnosis of PWS and illustrated how, even within countries, equality of access to treatments and social and financial support varies.  This is a common experience across countries; participants discussed the need to develop “Best Practice Guidelines” as a starting point in any campaign to influence change.

More about this presentation

Lynn reflected on her attendance at an IPWSO Conference in Germany and how she and colleagues were inspired to establish the ‘Harmony Farm and Garden’ which provides meaningful work for adults with PWS in Minnesota.

The subsequent discussion and challenges provided some useful insights into other countries and their approach; François Besnier, PWS, emphasises the need for social inclusion in his report.

More about this presentation

Georgina reflects on her 30-year career working with people with PWS and how she and others set about establishing an integrated clinical care facility – the PWS Specialist Clinic, Metabolism and Obesity Services – at the Royal Alfred Hospital, New South Wales, Australia. 

This is more than just a clinic; it is a centre for developing expertise, research and training, a knowledge hub – providing guidance to other medical specialism on the management and treatment of people with PWS –  a provider of holistic care, and moreover, for people with PWS and their families, it is the go-to place in times of difficulty. 

“Take me to the Royal Alfred – they understand me!”

Georgina provides us with insight into a model that may work in your country and advocates not to be deterred by a lack of funding or setbacks. Start small, find a willing doctor or clinician and build their expertise, knowledge and service, by encouraging others to use the same professionals.

Tony Holland, President, IPWSO

“Fostering links with services in your country and acquiring knowledge to prevent and manage behaviour and psychiatric problems”

More about this presentation

In this Session, Tony asks the question about how we as leaders in PWS in our countries might help develop the services and supports that are needed to prevent, detect, manage and treat people with this syndrome.  Some countries have well developed systems, others less so. However, by sharing experiences through the IPWSO ECHO® Leadership Sessions we can all learn from each other and help map a way forward.   

Essential components are explored including accessing to knowledge for health professionals, educationalists, parents and the wider community, access to guidance to enable understanding, and access to professional support.

Tony poses some questions that we might ask of our decision makers, such as whether a “Rare Diseases Plan” exists – an expectation of the World Health Organisation for all governments – and, if that plan does exist, does it recognise PWS?

Nathalie Kayadjanian, Independent Consultant and Expert in Translational Biomedical Research for Rare Diseases

“Clinical Trials for PWS”

More about this presentation

This presentation from Nathalie Kayadjanian, Independent Consultant and Expert in Translational Biomedical Research for Rare Diseases, provides us with an understanding of clinical trials – the terms, concepts and the drug development process.  Nathalie focuses on PWS and provides an overview of the active drug trials for hyperphagia and behavioural challenges and considers the HQ-CT as a measure for hyperphagia in PWS.   The opportunities, difficulties and lessons learned are explored. Nathalie concludes by highlighting the crucial role that caregivers play in the process, and in ensuring that clinical trials are made possible.

Elizabeth Dykens, Vanderbilt University, Tennessee

“Food is a poisonous drug” – what young people with PWS think about living with and curing their syndrome.

More about this presentation

People with PWS have important perspectives to share about themselves, their syndrome and future treatments.  Themes around hunger, food, anxiety, behaviour, new medicines, cures, acceptance of the syndrome, public awareness and advocacy are explored in a qualitative study undertaken by Elisabeth Dykens and colleagues, Elisabeth Roof and Hailee Hunt-Hawkins.  The insights offered by people with PWS stand to deepen our understanding of the PWS phenotype and to inform future clinical trials. 

Larry Genstil, PhD, Psychologist, Israel

“The child with PWS in the school”.

More about this presentation

“This talk has to be presented and discussed with every parent, kindergarten school, and caregiver who has a person with PWS in their care”.   

High praise indeed from a participant at Larry Genstil’s presentation on “The child with PWS in the school.  In this session Larry provides a comprehensive overview of how to create a highly structured and consistent school environment to best fit the needs of the child with PWS. 

Read more about the topics Larry addresses and the discussion that followed which provide valuable insights and links to helpful resources.

 

More about this presentation

In this Session, Tony asks the question about how we as leaders in PWS in our countries might help develop the services and supports that are needed to prevent, detect, manage and treat people with this syndrome.  Some countries have well developed systems, others less so. However, by sharing experiences through the IPWSO ECHO® Leadership Sessions we can all learn from each other and help map a way forward.   

Essential components are explored including accessing to knowledge for health professionals, educationalists, parents and the wider community, access to guidance to enable understanding, and access to professional support.

Tony poses some questions that we might ask of our decision makers, such as whether a “Rare Diseases Plan” exists – an expectation of the World Health Organisation for all governments – and, if that plan does exist, does it recognise PWS?

More about this presentation

This presentation from Nathalie Kayadjanian, Independent Consultant and Expert in Translational Biomedical Research for Rare Diseases, provides us with an understanding of clinical trials – the terms, concepts and the drug development process.  Nathalie focuses on PWS and provides an overview of the active drug trials for hyperphagia and behavioural challenges and considers the HQ-CT as a measure for hyperphagia in PWS.   The opportunities, difficulties and lessons learned are explored. Nathalie concludes by highlighting the crucial role that caregivers play in the process, and in ensuring that clinical trials are made possible.

More about this presentation

People with PWS have important perspectives to share about themselves, their syndrome and future treatments.  Themes around hunger, food, anxiety, behaviour, new medicines, cures, acceptance of the syndrome, public awareness and advocacy are explored in a qualitative study undertaken by Elisabeth Dykens and colleagues, Elisabeth Roof and Hailee Hunt-Hawkins.  The insights offered by people with PWS stand to deepen our understanding of the PWS phenotype and to inform future clinical trials. 

More about this presentation

“This talk has to be presented and discussed with every parent, kindergarten school, and caregiver who has a person with PWS in their care”.   

High praise indeed from a participant at Larry Genstil’s presentation on “The child with PWS in the school.  In this session Larry provides a comprehensive overview of how to create a highly structured and consistent school environment to best fit the needs of the child with PWS. 

Read more about the topics Larry addresses and the discussion that followed which provide valuable insights and links to helpful resources.

 

Flaminia Macchia, Executive Director and Hlawulani Mkhabela, Outreach and Engagement Manager, Rare Diseases International 

“International Advocacy and Global Collaboration for rare diseases”

More about this presentation

At this session, Flaminia Macchia, Executive Director and Hlawulani Mkhabela, Outreach and Engagement Manager, discuss RDI’s vision for a world where PLWRD and their families experience a better life through better recognition and support, improved health and social services. Specifically, Flaminia and Hlawulani consider how RDI:

  • advocates for rare diseases as an international policy priority,
  • represents PLWRD and their families at international institutions and fora, and
  • work to enhance the capabilities of members, such as IPWSO, through knowledge exchange, networking, mutual support and joint actions.

Key areas of focus for RDI include a global campaign for a United Nations General Assembly Resolution on PLWRD and their families, and also the development of the WHO Collaborative Global Network for RDs (CGN4RD).  IPWSO’s President, Tony Holland, and our Chief Executive Officer, Marguerite Hughes, sit on the Panel of Experts and provide technical advice, validation of the technical research and will be helping to inform the scope, structure and function of the CGN4RD.

This session provides an insight into the important and positive role that RDI plays to advocate for rare diseases and how vital it is for organisations like IPWSO to engage with membership bodies on international platforms.

Chris Smith, Senior Paediatric Dietitian, Royal Alexandra Children’s Hospital, UK

“PWS Dietary Management”

More about this presentation

In this session Chris Smith, a paediatric dietitian with over 18-years’ experience in clinical dietetics, presents on PWS dietary management.

Chris emphasises the importance of maximising the benefits of good nutrition and growth and minimising the risks that may be associated with poor nutrition or sub-optimal growth.  His passion for his job is clear. Seeing the results of good nutrition in clinical trials, as evidenced by the statistics, gives him great satisfaction and encouragement, however the real joy is in witnessing the development and growth of his patients over weeks, months and years as they benefit from the application of this knowledge and understanding.

Chris provides insights into 4 key areas that can help in dietary management:

  • the importance of tracking and monitoring growth;
  • the quality and quantity of diet;
  • calories, beyond food;
  • the need for flexibility through the ages.

Chris gives very concrete and helpful information to assist parents and carers in understanding dietary management, such as visual displays of portion sizes and embedding “hidden” exercise from an early age; recognising that the adolescent phase presents particular challenges, Chris also provides some helpful strategies.

He discusses the achievements and progress he has witnessed of weight loss in people with PWS when the knowledge, understanding, controls and supports are available.  This presentation gives us great hope for the future in managing dietary issues associated with PWS.

Reference is made to the following resources:

Exercise and physical activity: A guide for parents and carers. Kirsty Reid and Peter SW Davies, Children’s Research Nutrition Centre, The University of Queensland, Australia

PWS – Food Security: Basic Concepts Janice L. Forster: MD & Linda Gourash, MD, Pittsburg Partnership 2009

 Chris Smith – Biography

Chris is a paediatric dietitian with over 18 years of experience in clinical dietetics. Following his training in London, he worked at the Royal Free Hospital, London, for many years before moving to the Royal Alexandra Children’s Hospital, Brighton, in 2007. Chris is currently the lead paediatric acute dietitian in a team of 10 specialist dieticians. His main interest is in the clinical management of under nutrition in infants. Sub-specialties include gastroenterology and cystic fibrosis.

He has authored journal articles and book chapters in the field of nutrition and has presented his work at many international conferences. He has been involved in several multicentre trials of new formulas developed to manage growth failure the most recent published in Clinical Nutrition in 2017. Chris has also worked with the UK PWSA charity on several nutrition and growth projects.

More about this presentation

At this session, Flaminia Macchia, Executive Director and Hlawulani Mkhabela, Outreach and Engagement Manager, discuss RDI’s vision for a world where PLWRD and their families experience a better life through better recognition and support, improved health and social services. Specifically, Flaminia and Hlawulani consider how RDI:

  • advocates for rare diseases as an international policy priority,
  • represents PLWRD and their families at international institutions and fora, and
  • work to enhance the capabilities of members, such as IPWSO, through knowledge exchange, networking, mutual support and joint actions.

Key areas of focus for RDI include a global campaign for a United Nations General Assembly Resolution on PLWRD and their families, and also the development of the WHO Collaborative Global Network for RDs (CGN4RD).  IPWSO’s President, Tony Holland, and our Chief Executive Officer, Marguerite Hughes, sit on the Panel of Experts and provide technical advice, validation of the technical research and will be helping to inform the scope, structure and function of the CGN4RD.

This session provides an insight into the important and positive role that RDI plays to advocate for rare diseases and how vital it is for organisations like IPWSO to engage with membership bodies on international platforms.

More about this presentation

In this session Chris Smith, a paediatric dietitian with over 18-years’ experience in clinical dietetics, presents on PWS dietary management.

Chris emphasises the importance of maximising the benefits of good nutrition and growth and minimising the risks that may be associated with poor nutrition or sub-optimal growth.  His passion for his job is clear. Seeing the results of good nutrition in clinical trials, as evidenced by the statistics, gives him great satisfaction and encouragement, however the real joy is in witnessing the development and growth of his patients over weeks, months and years as they benefit from the application of this knowledge and understanding.

Chris provides insights into 4 key areas that can help in dietary management:

  • the importance of tracking and monitoring growth;
  • the quality and quantity of diet;
  • calories, beyond food;
  • the need for flexibility through the ages.

Chris gives very concrete and helpful information to assist parents and carers in understanding dietary management, such as visual displays of portion sizes and embedding “hidden” exercise from an early age; recognising that the adolescent phase presents particular challenges, Chris also provides some helpful strategies.

He discusses the achievements and progress he has witnessed of weight loss in people with PWS when the knowledge, understanding, controls and supports are available.  This presentation gives us great hope for the future in managing dietary issues associated with PWS.

Reference is made to the following resources:

Exercise and physical activity: A guide for parents and carers. Kirsty Reid and Peter SW Davies, Children’s Research Nutrition Centre, The University of Queensland, Australia

PWS. Food Security: Basic Concepts: Janice L. Forster: MD & Linda Gourash, MD, Pittsburg Partnership 2009

 

Chris Smith Biography

Chris is a paediatric dietitian with over 18 years of experience in clinical dietetics. Following his training in London, he worked at the Royal Free Hospital, London, for many years before moving to the Royal Alexandra Children’s Hospital, Brighton, in 2007. Chris is currently the lead paediatric acute dietitian in a team of 10 specialist dieticians. His main interest is in the clinical management of under nutrition in infants. Sub-specialties include gastroenterology and cystic fibrosis.

He has authored journal articles and book chapters in the field of nutrition and has presented his work at many international conferences. He has been involved in several multicentre trials of new formulas developed to manage growth failure the most recent published in Clinical Nutrition in 2017. Chris has also worked with the UK PWSA charity on several nutrition and growth projects.

Further materials from the IPWSO Leadership ECHO® will be made available here.

Copyright and other intellectual property rights in the speakers’ papers and presentations remains the sole property of each speaker and IPWSO has the right to use and broadcast such papers and presentations under licence. Copyright in the recording of the ECHO® session remains the property of IPWSO. No participant or any other person has the right to reproduce the recording, or any paper or presentation, in whole or in part, without the written consent of IPWSO.

The information contained in the multimedia content (video content) posted, represents the views and opinions of the original creators, and whilst IPWSO requests presenters to use content that is evidence-based and peer reviewed, the video content does not necessarily represent the views of IPWSO. The mere appearance of video content on this site does not constitute an endorsement by IPWSO or its affiliates of such content.  The content has been made available for informational and educational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. IPWSO hereby disclaims any and all liability to any party for any direct, indirect, implied, punitive, special, incidental, or other consequential damages arising directly or indirectly from any use of the video content, which is provided as is, and without warranties.

 

Join the IPWSO Leadership ECHO® Programme

Is your country represented? This Leadership ECHO® is only as good as the sum of its parts and your nation’s contribution is vital. Who can attend the IPWSO Leadership ECHO®?

The programme will be of interest to:

  • people who are active in existing PWS associations
  • people who are interested in developing PWS associations – parents and professionals

Details:

  • Start: December 2020. Next session (7 of 10) takes place Tuesday May 11th, 2021 08:00 GMT (09:00 BST, London, UK)
    Future sessions:  8th June, 6th  July & 20th July 2021
  • Duration: 10 sessions each lasting 90 minutes
  • Frequency: Monthly
  • Attendance: Free for all participants
  • Methodology:  All teach–All learn

Sessions will include short and focused presentations, discussions and opportunities for participants to present on the challenges they face in their respective countries.

We'd like to hear from you

Contact us with your stories, comments and suggestions for our IPWSO Leadership ECHO® programme.
Send your blogs, videos, text and images so we can share and inspire others!

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