Exercise for people with Prader-Willi syndrome
People with PWS are born with reduced muscle tone (which affects muscle contraction) less muscle mass and especially in childhood, weaker muscles than
non-affected people. Strong muscles are important for good movement and the protection of joints, ligaments and tendons.
Why is exercise so important for people with PWS?
Most children with PWS, develop a greater percentage of fat tissue than non-affected people, from infancy. Even when the person has a healthy weight for height (BMI) the percentage fat will be greater than in the non-affected person. This means it is much easier for them to gain fat and harder to “burn fat” through daily energy expenditure. The more muscle a person has the greater their potential for more “fat-burning” or energy expenditure, as muscle tissue burns energy (calories) first.
When people are on restricted energy intake menus, as needed by people with PWS to lose weight, there is a risk that their muscle mass will reduce as well as fat. People with PWS need to protect against muscle loss and this is only done through movement and exercise.
What can exercise do for people with PWS?
Fat loss! When we exercise we use the energy stored in our body as fat and glycogen in our muscles. Energy expenditure is naturally reduced in people with PWS, due to their reduced muscle mass. Exercise increases daily energy expenditure, both while exercising, as well as in the post exercise period. Without exercise our energy expenditure remains at a resting level, which is usually lower in people with PWS, meaning they burn fewer calories at rest.
Blood flow is increased with exercise. As we exercise our heart pumps out more blood carrying oxygen to every cell in our body, including our brain cells. Alertness improves as we breathe more deeply, filling our lungs with air and allowing increased levels of oxygen to reach our brain, through exercise. Slow deep breathing is also stress relieving. Hands and feet become warmer when exercising as blood flow is increased. This is important in PWS as peripheral blood vessels in the arms have been seen to be smaller in many adults with PWS. Increased blood flow reduces high blood pressure and exercises our heart and lungs to keep them healthy. Symptoms of sleep apnoea can, in some cases, be improved with exercise. Lymphodema is reduced through leg exercise, as the calf muscle works to pump fluid from the cells.
Bones are protected by weight, strong muscles and exercise. It is important for people with PWS to maintain a healthy weight, but if the weight is low, mainly due to strict dietary management, then bones can be at risk if the person does not have strong muscles or is not exercising regularly. Weight bearing exercise impacts on bone to increase bone density and bone strength. Strong muscles also impact on bone to increase bone density and bone strength.
Exercise can relieve stress and improve mood. Exercise also improves their self-esteem as they accomplish the set exercise task. Regular exercise provides a period of positive structure to the day, providing time to focus on a task rather than food.
Exercise naturally improves the body’s sensitivity to insulin. This is very important for people with diabetes, and pre-diabetic conditions as the increased action of the insulin will lower high blood glucose levels and improve a person’s diabetic control.
Exercise is an excellent source of sensory motor stimulation. Hypotonia in infancy leads to sensory hunger, and exercise is the best way to satisfy sensory motor needs.
When should someone with PWS start exercise?
Exercise should be started from birth and continued throughout life.
How do people with PWS respond to exercise?
Sometimes, poorly, initially, especially if they have not exercised regularly as a child. Also, they do not like to take on anything that is new to their routine or that requires effort. Exercising can be hard work at the start!
To be effective, the exercise needs to be regular. This is best achieved by making the exercise a part of their accepted routine. It is best if it can be done at the same time each day. Exercising before a meal or snack is good, but if the person suffers from regular constipation, or slower stomach emptying, exercising about 30 minutes after a meal will help. It may help to tell the person with PWS that the exercise has been prescribed by a health professional or director, to improve their fitness or strength.
Much praise is needed for effort and completion of the exercise! Praise must be genuine. They will see through false praise and likely become opposed to continuing. Start small and increase the duration or intensity very gently. Discuss the need to increase the exercise as they become fitter. Visual exercise plans or programmes will help.
Competitiveness can be a very positive tool. It is much more encouraging if you join in the exercise – eg walking with your person with PWS or competing with their efforts, for example on a treadmill. Having the person with PWS compete with themself to try to do “as good as” or “better than” the previous exercise session, or to “beat the clock” is another way of encouraging the exercise. Working towards a goal can be very helpful, especially to initiate a regular exercise pattern. That means your encouragement and support for the person with PWS to exercise must be ongoing. This can be hard, but is doable.
What is effective exercise?
Effective exercise increases your breathing rate, makes your heart beat faster and may cause sweating. By having your person with PWS walk, cycle, swim, dance or similar at an intensity that produces a “working” level they will improve their fitness, gain muscle, lose fat and have an improved mood.
What types of exercise are important for people with PWS?
Strengthening exercises
Exercising specific muscle groups will strengthen muscles and increase the number of muscle fibres to build bigger muscles. These exercises can be done with weights to have a better effect on strength. They are repetitive movements of the muscle. As the muscle becomes stronger the number of repetitions is increased.
Aerobic exercise
To improve the fitness of our heart and lungs as well as “burn” energy (calories), exercise must be of an aerobic nature. When exercising aerobically we take in more oxygen and use large muscle groups, usually involving the whole body for a continual movement. Examples of aerobic exercise are walking or dancing or swimming or cycling.
How to start
It is important to match the exercise to the person’s own ability and current level of physical activity.
If your person with PWS is doing no exercise and you know they are hard to motivate, start slowly. Small breaks may be required by some people, when getting started. Talk with them about the idea of starting an exercise regimen to make them strong and improve their fitness. It also helps to offer an incentive or some competition, for example, you might suggest to them “Let’s see if I can keep up with you when you exercise”
Suggesting an appropriate reward may also help get them motivated; “If you can cycle for 10 minutes on 3 days each week, you may have an extra 15 minutes at the park on Saturday.” Using a visual chart to record progress and rewards can be very motivating.
It is very important to have someone supervise or join them in the exercise due to poor body orientation and sensation, and to ensure it is completed effectively You, or someone else, could tell them you (or someone else) also wants to get fit and will join them to see who can do the best. When initiating an exercise program for someone who is not particularly active they may start by exercising for 10-15 minutes 3 times per week, then increase the time up to 30-60 minutes, 5-6 days per week. Exercise will decrease your stress as well! However, to maintain the regularity of exercise for your person with PWS, seek assistance from others who can step in to accompany them when you are not able to or just want a break.
When a person with PWS is exercising regularly and effectively they may reach a stage where extra energy intake is indicated. One additional serve of protein can be included in their regular, restricted food intake. For example, one extra slice of lean meat or chicken could be added to their usual lunchtime sandwich, if they continue to lose weight.
How much exercise is enough?
For the general population, doctors recommend one hour per day to maintain body weight and for cardiovascular fitness. For weight loss, doctors recommend 2 hours per day. Do people with PWS need to do this much exercise? Some may, when their fitness greatly improves, but we must be mindful of each individual’s musculoskeletal condition at the age they commence effective, regular exercise.
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.