Motivating someone with PWS
How many times have you thought “he/she is so lazy….” “they won’t do anything I tell them to do”, “they won’t do their exercise”, “I told him/her to tidy his room 1 hour ago and he/she hasn’t even started”, “ he/she is so slow to get ready”.
Self-motivation is not easy for most people with PWS
A simple way to remember some key tools to help motivate someone with PWS is to think of RED CARRPS. Carp fish constantly swim around looking for food. The colour orange is often associated with “hunger” as it stimulates the brain, increasing mental activity and the sensation of hunger. Red carp are really a deep orange colour.
The R of red is for RESPECT
It goes without saying that every person should be respected for who they are. It is no different for people with PWS. In addition to respecting who they are, if we are to assist them in living a healthy life as a part of society, we must also respect PWS and the commonalities seen in people with PWS. People with PWS think differently, respond differently and react differently to other people. Learning and knowing as much about PWS as is possible, will make life easier for you and your person with PWS.
Learn as much as you can about PWS. Tell your person with PWS that although you don’t have PWS, you do know a lot about it. Tell them you do not know what he/she is expecting but they can help by telling you. Be confident in your knowledge and in telling them know that you understand how hard it must be to constantly want to eat or drink and be distracted by those thoughts.
Understanding how people with PWS think and practising appropriate ways of speaking to them and responding to what they say and do, is important. People with PWS respond and react to the manner in which they are spoken, as well as what is said to them. It can be difficult for them to distinguish between fantasy and reality. As a result of their concrete thinking, poor comprehension and planning, difficulty interpreting the emotions of other people (that is, reading their facial expressions and understanding voice levels) and heightened anxiety they often misinterpret what is meant by other people. Always give them time to comprehend what you say or ask. They will need more time to reply or answer you, than other people. Wait for a response before giving or asking for more information. Some people with PWS feel they are always “in trouble” or being accused of something, so they remain defensive. It is always important to communicate in a way they can understand. Pictures are more easily understood than words. Focus on their strengths and abilities.
C is for Challenge
People with PWS like to achieve. They are often competitive and like to “win” or at least be thought of as very capable. They are capable of many things, but may need to be challenged to demonstrate their capabilities. Suggesting that they can or might be able to … (do something) or do it better than someone else, can often motivate them to take up that challenge. For example “John, I imagine you would be pretty good at swimming. Do you think you can swim across a 15 meter pool? I’d like to give it a go. Do you think you can beat me?” Even setting goals to compete with themselves can be effective: “let’s see if today you can beat your best time of walking around the block…let’s go!”
A is for Acquired Agreement
Encouraging acceptance of what is suggested as positive “self-choice” rather than telling someone with PWS what must be, generally works better. “It is very cold outside. The temperature is xx. Let’s put on a jacket, just in case you need it. What do you think? Would you prefer to wear, the blue or the black one?” Or another example: “If you want to lose more weight, how about having a tub of 3 different types of vegetables – cucumber, tomatoes and carrot, as well as your choice of either a piece of fruit or small tub of low fat yoghurt, for morning tea, instead of 1 small bag of chips? What do you think? This is a lot of food isn’t it?” Remember to always select appropriate choices to offer your person with PWS and allow time for your words to be processed and responded to, once they have been understood.
R is for Responsibility
People with PWS respond well to responsibility. It indicates to them that you believe in their ability. It gives them something to focus on and appeals also to their sense of pride. They are so often “in trouble” so giving them responsibility is a sign to them that you trust them to do something or take charge of something. This can make them feel very good about themselves. What you ask them to take responsibility for needs to be achievable for them. It could be something very simple such as putting the remote controls back where they go each night when the TV is turned off or turning off the light, before sleep. Being responsible for a particular task in a workplace can encourage a well completed job, done with pride. Praising them for the well done job makes them feel successful!
R is for Rewards
We know that most adults with PWS still only have the emotional maturity of small, young children, so rewarding them for things done well, is a form of encouragement to do well again. It also congratulates them for achieving something. However, the reward needs to be appropriate and not something that will prove to be difficult to continue, or threaten their health. It is recommended to never make extra food a reward, but a planned snack or meal that follows an exercise session can be a good motivator. A known reward can be an incentive to complete a task. Rewards for regular achievements should be small/tangible/realistic/repeatable. Never imply that failure to complete a task will result in a loss of a scheduled meal or snack reward; use the reward to motivate by saying “Let’s do this! Then you can relax and have your scheduled snack (or meal).”
Just as with children, effort is motivated by incentives and rewards and with the adult providing the necessary support for the child’s success. So it is for people with PWS, supported incentives and rewards can be used to successfully motivate a person with PWS.
P is for Praise
All people like to receive genuine praise. Recognition for timely completion of a task or not over reacting when the usual physical therapist was not at the gym or coping with an unplanned change to routine are big achievements for people with PWS. These achievements deserve praise, and the praise given will be much appreciated by your person with PWS. Praising positive behaviour as well as achievement nurtures self-esteem and improves mood. They will remember how you reacted and why you praised them. The positive behaviour you praised is more likely to be practiced again!
S is for Security
The more secure a person with PWS feels the lower is their level of anxiety. In order to be able to motivate someone with PWS you must first win their trust, so they can believe in what you say. When you are positive, encouraging and animated you will maintain their focus and interest. Giving them the chance to make a choice, by providing appropriate choices, empowers them in a safe and protective manner. Their sense of security is maintained when you remain calm, gentle, consistent and honest with them. Shouting, coaxing, wheedling or threatening is confusing and may only increase the person’s anxiety levels. Letting them know your realistic boundaries in a quiet, confident voice, also challenges them to act in an acceptable manner. Remember, your happy face and calm voice will increase their comfort and security.
As with all people, mood strongly influences motivation and people with PWS can have rapid and extreme mood changes, most often due to sudden anxiety and misunderstandings. When in some moods, there is very little that can be done to motivate a person with or without PWS, so always wait until a difficult mood passes, to enhance the effectiveness of your motivation.
This article was written by IPWSO’s Famcare Board.
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Paediatric Association of Nigeria - 57th Annual Scientific Conference
IPWSO was proud to support a dedicated PWS symposium at the 57th Annual Scientific Conference of the Paediatric Association of Nigeria (PAN) Conference held 21-23 January 2026 in Ogun State.
Famcare Board Member, Dr Elizabeth Oyenusi, presented on the clinical features, diagnosis, and management of PWS, while Dr Oluwakemi Ashubu shared the first genetically confirmed case of PWS in the country - an important milestone. The session attracted over 104 delegates and sparked a lively discussion.
IPWSO also hosted an exhbition table throughout the 3-day conference, distributing educational materials and engaging directly with healthcare professionals.
We are hugely grateful to Dr Oyenusi, Dr Ashubu and Dr Oladipo (Senior Registrar) for their support in making this educational oureach possible - helping to strengthen awareness and improve early diagnosis of PWS in Nigeria. Funding for this event was kindly provided by Friends of IPWSO (USA).
Global Newborn Society Inaugural Conference, Sweden
The Global Newborn Society’s 1st Conference took place in Uppsala and Stockholm, Sweden, from 2-4 November 2025, marking an exciting milestone for the organisation’s international community.
We were delighted that Dr Susanne Blichfeldt was invited to deliver a plenary lecture on behalf of IPWSO, titled “Neonatal Hypotonia: Clinical Features Seen in PWS That Can Help Differentiate It from Other Congenital Disorders with Similar Symptoms.”
The inaugural event brought together a diverse audience of physicians, nurses, and social care leaders from around the world. The programme was wide-ranging and stimulating, featuring cutting-edge discussions on newborn health, early diagnosis, and innovative care practices - setting a strong foundation for future collaboration within this growing global network.
ASPED 2025, Dubai, UAE
The 6th conference of the Arab Society for Paediatric Endocrinology and Diabetes was held in Dubai over two days on the 26th and 27th September 2025. IPWSO was invited to be a partner and to present at a session on PWS. The conference was attended by over 400 paediatric endocrinologists from more than 20 countries in the Middle East and North Africa. Charlotte Hoybye and Tony Holland attended and presented on behalf of IPWSO and Dr Sarah Ehtisham described her experience seeing patients with PWS in the United Arab Emirates. IPWSO hosted a stand for the whole conference.
In conversation many attendees reported seeing people with PWS and described the challenges they faced, particularly with the management of behaviour problems. Some felt nervous about starting growth hormone as they had had no experience prescribing it to infants with PWS.
Approximately 100 attendees joined the IPWSO mailing list and attendees were very keen to gain knowledge about PWS. Numerous memory sticks with information on PWS and printed material in English and Arabic were taken. Some attendees talked about establishing national or regional PWS Associations.
This was an extremely positive experience and hopefully attending this meeting has laid the groundwork for IPWSO to engage more fully in the Region in the future. We were very well looked after, and the organisers were excellent hosts.
EPNS 2025, Munich, Germany
Together with parents and representatives from the Prader-Willi-Syndrom Vereinigung Deutschland, we were proud to host a PWS exhibition stand at the 16th Congress of the European Paediatric Neurology Society, held in Munich from 8-14 July 2025. The event welcomed over 2,000 medical professionals from around the world.
We had the pleasure of engaging with attendees from Türkiye, Iraq, Palestine, Croatia, Moldova, the Philippines, Ukraine, North Macedonia, Kazakhstan, Armenia, and many local specialists.
Dr. Stefani Didt, Gesellschafter at Katholische Jugendfürsorge der Diözese Augsburg, kindly supported us at the stand and provided expert responses to clinical enquiries. We hope these international connections will contribute to raising awareness about IPWSO’s work, particularly in improving access to genetic testing in underserved regions.
We also highlighted the new treatment for hyperphagia and shared our recent publication, "Improving Mental Health and Well-being for People with PWS."
Sincere thanks to our colleagues from PWS Vereinigung Deutschland and to Dr. Didt for their invaluable support.
ESPE-ESE 2025, Copenhagen, Denmark
IPWSO was honoured to participate in the recent Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE), held in Copenhagen from 10–13 May 2025. This important event provided an invaluable opportunity to raise awareness of Prader-Willi syndrome (PWS) among a broad international medical audience.
IPWSO was represented by our CEO, Margaret Walker, along with Dr Charlotte Höybye from Sweden and Dr. Susanne Blichfeldt from Denmark—both esteemed members of IPWSO’s Clinical and Scientific Advisory Board.
Dr Blichfeldt noted that this congress is a major event in the clinical academic calendar and has a particular significance as it marks the first-ever joint meeting of these two prominent societies. Despite its European designation, the congress attracted participants from around the globe, including delegates from the Middle East, Africa, the United States, Japan, Australia, and New Zealand.
IPWSO’s educational booth was strategically positioned within the Patient Advisory Group area dedicated to rare disease organisations. As part of the programme, we were invited to deliver a 30-minute presentation during the Patient Voices Session. Dr Charlotte Höybye and Dr Susanne Blichfeldt presented on Prader-Willi syndrome (PWS), with a focus on genetics, endocrinology, and clinical manifestations. Our presentation, along with many others, was recorded and is now available on demand via the ESPE-ESE congress platform.
PWS was prominently featured throughout the congress. In a session on the transition of care for patients with rare diseases, Dr. Maithé Tauber (Toulouse, France) discussed the specific challenges associated with the transition period in PWS. She emphasized the need for multidisciplinary care and ongoing specialist follow-up in adulthood through dedicated PWS clinics.
Another session addressed medical and clinical management in both children and adults with PWS, again highlighting the critical importance of a smooth transition from paediatric to adult care and the role of specialised clinics. The session included an in-depth discussion on hyperphagia in PWS, exploring its profound impact on individuals and their families. Management strategies were reviewed, and a new medication, Vykat, was presented as a potential treatment for hyperphagia.
In addition, there was a strong presence of scientific posters on PWS from various countries, covering a wide range of topics such as hormonal therapies, genetic findings, ageing, and guidance for families. A total of 33 posters focused on PWS, reflecting a growing global interest and commitment to advancing knowledge and care in this area.
We were greatly encouraged by the high level of engagement and the visibility given to PWS throughout the congress. This increased awareness brings hope that more children will be diagnosed earlier and receive appropriate, specialised medical care from childhood through to adulthood.
ASPAE 2025, Abidjan, Côte d’Ivoire
After Yaounde (Cameroon 2023) and Alger (Algeria 2024), IPWSO was pleased to be present at the 16th Annual Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE), at the invitation of Dr Kouamé Hervé Miconda, Programme Co-organiser. Prior to the main conference, IPWSO, in partnership with Dr Micondo, organised a dedicated PWS workshop which attracted 60 professionals - paediatricians, endocrinologists, doctors, students, nurses, and midwives.
MENA 2025 Abu Dhabi, UAE
The Middle East and North African (MENA) conference for Rare Diseases was held in Abu Dhabi, United Arab Emirates, between 17th and 20th April 2025. Tony Holland represented IPWSO at this meeting and presented a poster about our work. The conference was attended by clinicians, genetic councillors, scientists, and other health disciplines from across North Africa and the Middle East. The conference was in English as many clinicians in this part of the world are from elsewhere and not Arabic speakers. The conference was of a very high standard and ranged broadly across many rare genetically determined conditions as well as there also being discussions about how to develop services and how to seek approval for new treatments. Our poster was one of five that was selected as the best posters exhibited at the meeting. Tony said, "My experience of the conference was very positive and I am sure there are opportunities that can be built on. Being part of the endocrinology meeting, which is likely to be attended by endocrinologists from across the whole region, provides a wonderful opportunity to engage more fully with clinicians most likely to see people with PWS".
Kenya Paediatric Association Annual Scientific Conference, Monbassa, Kenya
Dr Menbere Kahssay and Dr Renson Mukhwana, Aga Khan University Hospital, Nairobi represented the Kenyan team and, together with Drs Constanze Laemmer and Dr Charlotte Höybye, managed the IPWSO educational booth at our first meeting in this region.
A dedicated session on PWS significantly raised awareness and knowledge about the syndrome among paediatricians and allied health professionals.
Dr Kahssay said, "We were able to have track and plenary session and four days interaction with the participants at the booth.
The PWS session focused on case experiences and regional differences in PWS management. Thanks to IPWSO’s support, Drs Charlotte Hoybye and Constanze Lammer joined as expert speakers, sharing their valuable experiences in managing PWS across the neonatal, childhood, and adult stages".
Dr Menbere Kahssay and Dr Renson Mukhwana presented genetically confirmed local cases, highlighting diagnostic challenges and treatment approaches.
Third Biennial Rare Diseases Conference, Rare X, Johannesburg, South Africa
Karin Clarke and Molelekeng Sethuntsa organised the IPWSO exhibition table at this event in Johannesburg from 14-17 February 2024. Molelekeng attended the conference and reported on the excellent discussions that focused on the challenges of early diagnosis, especially in Africa, centres of excellence, and ways that the Department of Health, WHO and RDI can improve detection and treatment of rare diseases.
6th RARE Summit 2023, Cambridge, UK
Tony Holland, President, and Agnes Hoctor, Communications and Membership Manager, represented IPWSO at the 6th RARE Summit organised by Cambridge Rare Disease Network on 12 October, 2023.
MetaECHO® 2023, Global Conference, Albuquerque, New Mexico
The 5th MetaECHO® Global Conference took place from September 18-21 in Albuquerque, New Mexico. It celebrated 20 years of ECHO programmes and brought together ECHO leaders, partner teams, government officials, funders, policy makers, and industry experts to share retrospective work and thoughts on the future of ECHO. Our President, Tony Holland, presented a paper on “A Global ECHO Programme for the Rare Disorder – PWS", based on IPWSO’s Project ECHO programme.
EPNS 2023, Prague, Czech Republic
The 15th European Paediatric Neurology Society Congress (EPNS) took place from 20-24 June. Tünde Liplin, PWS Hungary, and Hana Verichová, PWS Czechia, represented IPWSO. Twenty-two people from countries including Georgia, Israel, Lithuania, Turkey, Italy, Slovakia, Romania, Netherlands, Bosnia Herzegovina, Belgium, Argentina, Norway, Serbia, India, and Australia subscribed to the "Stay in touch with IPWSO!" contact list. Tünde reported that many people came to the stand just to inquire and chat, the majority of whom were hearing about IPWSO and our work for the first time.
ECE 2023, Istanbul, Turkey
The European Congress of Endocrinology (ECE) took place from 13-16 May. We hosted an information table and were represented by IPWSO advisers, Constanze Lämmer and Charlotte Höybye, and also our Communications and Membership Manager, Agnes Hoctor. We were pleased to be given the opportunity to present on IPWSO and PWS at the Hub Session. The most exciting and important element for us was that the Turkish location meant that delegates came from many countries in Middle East as well as Europe.
ASPAE 2023, Yaoundé, Cameroon
We hosted an educational booth and presented at the round table on Obesity at this important Endocrinology conference hosted by the African Society of Paediatric and Adolescent Endocrinology (ASPAE) from 9-10 February. Read our blog about our visit.
ECE 2021, Online
We hosted an educational booth and gave a presentation at the European Congress of Endocrinology in May 2021.
ESPE 2019, Vienna, Austria
We exhibited at the European Society of Paediatric Endocrinology (ESPE) Conference in Vienna, Austria, which took place in September 2019. Find out more in our blog.
ECE 2019, Lyon, France
We exhibited at the European Congress of Endocrinology in May 2019.
Dr Ashubu discussing IPWSO's educational materials with delegates at our booth.
IPWSO was honoured to be invited to present at the Global Newborn Society's Inaugural Conference.
Dr Sarah Ehtisham presenting at ASPED 2025 followed by a panel discussion.
Colleagues from PWS Vereinigung Deutschland help manage our PWS stand at EPNS 2025. Many thanks to all the parents and carers for their invaluable support!
Dr Charlotte Höybye (Sweden) and Dr. Susanne Blichfeldt (Denmark) presenting at the ESPE-ESE Patient Voices Session - May 2025
Dr Blichfeldt and Margaret Walker (CEO) managing our IPWSO educational booth.
François Besnier, IPWSO's Vice President, meeting some of our travel fellowship delegates at ASPAE 2025.
IPWSO's poster achieves top award!
Many thanks to Drs Constanze Laemmer, Menbere Kahssay, Charlotte Höybye and Renson Mukwana for all their support at KPA 2025.