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About 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

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. 

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.

Announcing a new IPWSO Leadership ECHO® Programme starting in December 2020

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

Further details

  • Starts: December 2020
  • Duration: 10 sessions each lasting 90 minutes
  • Frequency: To be decided by participants
  • Numbers: Restricted – 2 representatives from each country
  • 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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