Meeting with Professionals
People with Prader-Willi syndrome (PWS) often present as cooperative, knowledgeable and highly capable of making their own decisions. They appreciate responsibility and respect. Adults with PWS, who are intellectually able, usually resent the fact that parents or other family members want to accompany them to appointments with professionals involved in their health care or life matters.
This can create much frustration for parents and families as well as the professionals. It can also lead to misleading information being received and incorrect action being taken on the part of the professional.
How can family members avoid difficult situations based in misrepresentation and misinterpretation while maintaining respect for and avoidance of belittling of the person with PWS?
We know people with PWS can be very suspicious and guarded when it comes to disclosure of their “negative” traits, but people interviewing them, whether it be for health or a social issue need to be aware of the characteristics of PWS.
People with PWS also have the right to health and social care provided by an informed professional. Given that people with PWS make up a very small percentage of the population, PWS-informed professionals are not common.
This information covers important facts about PWS and tips to enhance the communication between the person with PWS and the professional with whom they are meeting. It highlights why knowledge of PWS is important and what can happen if it is not understood. Parents and/or caregivers of people with PWS have a “responsibility of care” to provide this information. For best practice of health management they need to be heard, as this information will not be given to the professional by the person with PWS. If possible, maintain regular follow-up with the same professional, so a relationship can be developed between them and your person with PWS and yourself.
Knowledge of PWS is important for good communication
- PWS is a complex syndrome.
- It affects several systems in the body.
- Good verbal ability may hide the impairment of accurate recall, poor reasoning, impaired problem solving and a poor concept of time, number or quantity and severity.
- A very high pain tolerance and lack of temperature response can mask injury and illness. A childlike fear of pain or the knowledge of “gain” from reported pain can confuse the existence of real pain. Some people with PWS are also not good at accurately pinpointing the actual site of pain. Pointing to the elbow could just mean they have a painful arm – anywhere from the shoulder to the wrist.
- People with PWS are concrete thinkers and have poor sequential processing skills. So replies to questions may appear delayed or be interpreted as a lack of understanding or ignorance of the topic at hand. People with PWS need time to comprehend a question and then cognitively organise an appropriate response. Their cognitive organisation (executive ability) is slow.
They do better with simple, direct questions, not multi-stepped questions or more than one at the one time. Avoid comments that could have ambiguous meanings or those that require specific interpretation. It is better to “suggest” what is needed and to offer choice, where possible, rather than demand what must be done.
Clarification from the professional of specifics of treatment or management is essential. People with PWS are generally not good at “reading between the lines”. Flippant comments or generalisations are often heard as fact!
For example: John, with PWS, has fallen in the street and grazed his left knee. He is demonstrating much pain! His knee is x-rayed and no broken bones are found. His cut is dressed with a small bandage. The doctor tells him to take paracetamol for the pain. You ask: how many should he take, how often and for how long? The doctor may answer: as many as he needs for as long as he has pain. You could then ask: can you please confirm how many he should take at one time and how many times per day he should take them? When should he stop taking the tablets?
- Memory recall is not always accurate! It may be embellished due to the practice of confabulation or story-telling, which is often seen in people with PWS. Memory may also be distorted due to misinterpretation by the person with PWS. A poor perception of time may influence their history of reported symptoms, duration of signs and time-lapse since a significant event.
They may also withhold information for fear of being “in trouble” and may falsely implicate another person to avoid personal blame.
- The self-orientation seen in people with PWS can cause them to complain of fictious pain or injury in order to receive attention, and even hospitalisation, especially if a past experience of hospitalisation has enabled increased food access or some other desired, but inappropriate, result. The hope of being prescribed medication may encourage increased symptom reporting.
Thorough investigation of all complaints is essential, before treatment or medication is prescribed.
- People with PWS have a heightened level of anxiety most of the time. Suggesting the immediate introduction of a new or changed strategy or treatment may cause anxiety as people with PWS become stressed with the thought of change. Discussing weight loss and the possible alteration to, or reduction of food will always increase anxiety and should only be discussed when necessary. Where possible, the person with PWS should be informed prior to the meeting of who they will be seeing and why.
- Delays and changes to appointments can increase anxiety and agitation of the person with PWS. Inform your person with PWS that appointments don’t always run to time and they may just have to wait for a while to be seen. Also, and more importantly, if they are late for the appointment they may not get to see the professional, as he or she may have lots of other people to see that day, as well!
Family members usually have the greatest knowledge of their person with PWS. If it is possible to arrange, try to speak with the professional prior to their first appointment with your person with PWS. Use this opportunity to inform them of relevant information that, if discussed in the consult, is deemed likely to cause stress to the person with PWS and the overall interview. Suggest that they ask the person with PWS, at the start of the consult/meeting if you can assist them by answering anything that the person with PWS doesn’t know or can’t remember. This makes the person with PWS the focus of the meeting, but allows you to contribute, at the request of the professional.
A “gently, gently” attitude will result in a more positive experience for both the professional and the client. Allowing plenty of time for the meeting is also helpful.
Be aware of all medications and doses of medications that your person with PWS is taking. If a new medication is to be prescribed inform the clinician that people with PWS are best started on lower than usual doses of most medications. Don’t forget to arm yourself with the IPWSO Medical Alerts booklet.
Respecting the person with PWS for who they are is always important. As the appointment is for them, they will probably want to answer all the questions they are asked. If possible, ask them for permission to answer any questions for them, if they do not know the answers. Ideally, speak with the professional before the appointment and ask them to suggest to the person with PWS, permission for you to assist with the answers in the appointment. If this suggestion comes from the professional it will make the idea of a “carer” or family member assisting with answers, being normal for everyone, not just the person with PWS. It will also demonstrate respect for the person with PWS and help to develop a good relationship with the professional. Keep everyone on the same page!
Remember to take with you to all appointments for people with PWS:
- a list of medications and doses they are taking
- a list of names and contact details of other professionals seeing your person with PWS
- a copy of the IPWSO Medical Alerts booklet and the IPWSO website address
PWS is a little known syndrome. The more you can spread the knowledge about PWS the better for all – your person with PWS, professionals involved in his or her care and yourself.
This article was written by IPWSO’s Famcare Board.
International Community
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
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.