Setting Boundaries
Personal boundaries are guidelines, rules or limits that a person creates to identify for themselves what are reasonable, safe and permissible ways for other people to behave around them and how they will respond when someone steps outside those limits. They are built out of a mix of beliefs, opinions, attitudes, past experiences and social learning (Wikipedia, the free encyclopedia).
People with PWS have a heightened anxiety and need others to set consistent and consistently enforced guidelines or boundaries for them to feel safe and respond appropriately to what is going on around them. Boundaries include positive behaviour strategies through the encouragement of desired behaviour rather than the punishment of undesired behaviour. Boundaries teach the person with PWS what is desired by you and society and how to communicate effectively. Anything taught must be simply stated, understandable and reinforced in a consistent manner to minimise anxiety.
Using boundaries is important for all people working with a person with PWS. They are tools to help reduce anxiety and poor reactions by the person with PWS to what is happening or being said to them. When boundaries are not put in place by all people involved with the person with PWS, it is confusing and problematic for the person with PWS. Lack of consistent use of boundaries can create long lasting difficulties for people with PWS. Boundaries keep us all “on the same page”.
Let’s remember how people with PWS think…
- For most people with PWS, there exists constant, life-long anxiety from choices to be made, the things they hear and see, the speed at which decisions have to be made, the constant drive to eat and in many cases, the desire to be “the same” as others. As well, most people with PWS are concrete thinkers! The words you use and the tone of voice you use are what the person with PWS will hear. Very few can “read between the lines” or interpret an underlying meaning. If you speak loudly or with even a slightly annoyed tone, they will “hear” that you are angry. This will increase their anxiety and most often result in a negative response! If you become anxious, their anxiety will also increase. Make every word count because the person with PWS will hear all the words but may not always understand the meaning of what is said. Using fewer words and a gentle voice keeps you calm and stops you saying words that can be misinterpreted or latched on to for an argument. Less is more
- Too much choice is confusing for people with PWS. Limited, appropriate choice keeps everyone safe. We would not ask someone with PWS: “where would you like to go, today?” We might ask: “would you like to see a movie or go to the zoo, today?” Less is more
- Using visual guides is always helpful! Too many instructions are confusing as people with PWS have a delay in their information processing ability and often miss bits of what is said. Displaying pictures to describe a task of several steps makes the process easier to understand. For example: washing hands – a picture is easier to understand, learn from and remember for people with PWS. Remember that people with PWS have enhanced spatial patterning skills – they take in the whole pattern at a glance!
The earlier in life boundaries are established, the easier it is for the person with PWS. By the time adulthood is reached, many parents are exhausted by the constant PWS management they have had to practise. Some parents also feel that as the person is now an adult, things will change or they should have the ability to be responsible for their own behaviour, and boundaries that were consistently in place when they were children, can now be relaxed. We know this is not the case for people with PWS. They will always require consistent behavioural management strategies, including firm, clear boundaries, which will be constantly tested by the person with PWS. If they think there is any chance of breaking them down they will persist even more so. Once boundaries have been loosened or the person with PWS has experienced the freedom of minimal or no boundaries, their world gradually starts to fall apart. It is then so much harder to reinstate the boundaries that had previously kept them feeling “safe” and had reduced behavioural outbursts. As well as respecting the individual with PWS we must remember to always respect the characteristics of the syndrome that will not change. Expectations for the person with PWS must remain realistic.
Reinstating boundaries is hard, but not impossible! Generally, a catalyst will help provide a platform from which to introduce change – that is, by changing the non “bounded” environment back to one that is “bounded”. Writing up new or reinstated boundaries in the form of a contract can be very helpful! Simple, clear explanations as to why the boundaries are necessary are essential and if possible, can be suggested by a doctor or other professional detached from the family.
Basic boundaries practised for children with PWS, for example, around the regularity and quantity of treat foods, will still apply to adults with PWS, however, the implementation of the boundaries may alter for the adult with PWS. Boundaries need to be reviewed frequently, to maintain their appropriateness to the individual and their effectiveness in each person’s situation. Boundaries may need to be adapted to different stages in life and changed circumstances – for example, during the transition period from school to post school programs or from a “community” program to a work program.
Be aware of changes in boundaries, especially those that sneak into the person’s usual lifestyle!
Parents are the initial and most important boundary setters, as they know their child (young or adult) better than anyone else and they have been the key people in the lives of their child. When an adult with PWS starts attending programs independent of family it is often seen as an opportunity to develop his/her independence. Parents may, often reluctantly, step back from their role as boundary-keeper, as they allow caregivers to develop a working relationship with their person with PWS. This is when boundaries may be refined for the situation, but their necessity still remains.
A parent writes…
When my daughter started attending a day program she was introduced to the practice of having an early morning coffee with the staff and again at tea time. This number of cups of coffee have gradually increased and become “holy ground” for her. In conjunction with this her use of artificial sweeteners has escalated dramatically, because she was in charge of the sweeteners. In hindsight, I realise I should have been more on the alert! The process to set new boundaries was a very difficult one and caused challenging behaviour. I should have kept limits on her usual daily coffee intake and never have allowed her to start using artificial sweeteners.
Should the breaking of boundaries carry consequences?
Consequences emphasise the importance of boundaries, but do people with PWS learn from consequences? We all know that food will be eaten if accessible, no matter what, and that having “punishment” type consequences around the eating of unplanned food is not fair for people with PWS. However, having appropriate consequences for known, discussed and understood boundaries, can be quite powerful. The consequences must also be well understood and always carried through, should a boundary be broken. Remember, the power of consistency!
For example: Peter loves bowling and usually goes every week. There is a cake shop on the way to bowling and on one occasion, when he was being taken to bowling by a casual staff member, he managed to get them to buy a fruit bun for him. His reason was that he had not eaten all of his breakfast and was feeling a little “weak”. The staff member was rebuked for allowing this, as it was not Peter’s schedule but he can be very convincing to unsuspecting new staff! Ever since this event, on occasions when Peter is in a bad mood, he will stop on his way to bowling and try to convince the staff member accompanying him, that he really needs a fruit bun. In most cases he is reminded of the “boundaries” but sometimes he will become very agitated and on rare occasions, a full blown temper tantrum will occur. His staff has now implemented the consequence of returning home immediately, should he becomes agitated concerning the cake shop. So he does not attend bowling that day. The frequency of missed bowling days is very low, as he is reminded of how much he enjoys bowling each night prior to his planned attendance.
Is it the boundary or the consequence that has improved Peter’s behaviour near the cake shop?
Possibly the answer is the combination of both. Both example situations highlight how important it is for all family members and caregivers to be well informed about PWS and the need for people with PWS to have consistent boundaries.
The most effective boundaries are those that are seen, by the person with PWS, to be beneficial to him/her in some way, or to be acceptable to an intelligent person, such as himself/herself.
What keeps a boundary effective is the belief in its worth and the consistent practice of that boundary.
This article was written by IPWSO’s Famcare Board.
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Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
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.