What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally. Prader-Willi syndrome is rare and most people, including many physicians and caregivers as well as new parents and family members, are not familiar with this syndrome. We have produced a collection of guides and resources about Prader-Willi syndrome for families, medical professionals and other people involved in the care and support of people with Prader-Willi syndrome.
Cause
Prader-Willi syndrome is a genetic condition whose cause is quite complex.
It occurs when there is lack of expression of one or more genes in a specific region on the chromosome 15 that was inherited from the father, the precise location of the abnormality being designated as 15(q11-q13).
There are 3 common ways that this lack of expression can occur:
• there is a missing segment at this location from the chromosome 15 that was inherited from the father, called a deletion (found in about 70%);
• the entire chromosome 15 contributed by the father is missing and instead there are two chromosome 15’s inherited from the mother, which is called maternal uniparental disomy 15, or UPD 15 (found in about 25%), or
• there is a defect in the normal expression of the relevant genes due to an abnormality in control of gene expression, called an imprinting defect (found in 5% or less). The syndrome generally occurs as an isolated event in the family and risk is low that parents with one affected child will have another child with the same condition in the vast majority of families.
There is nothing that either parent did or did not do, either before or during the pregnancy, that causes this genetic alteration.
What are the symptoms of PWS?
Physical characteristics:
There is usually a characteristic facial appearance with a narrow forehead, almond-shaped eyes, and a thin upper lip with downturned mouth. However, where children with Prader-Willi syndrome receive growth hormone this is much less obvious. Scoliosis (S-shaped curvature of the spine) may develop. Many individuals with Prader-Willi syndrome who have the deletion type have fairer colouring of their hair, eyes and skin compared to other family members.
Growth deficiency:
People with Prader-Willi syndrome typically have short stature compared to the family height and small hands and feet. Early growth may be below normal, and there is failure to have a pubertal growth spurt, although treatment with daily growth hormone will correct this problem and height may then be normal.
Hyperphagia (drive to eat):
People with Prader-Willi syndrome have an abnormality in the part of their brain (the hypothalamus) that helps determine changes in feelings of hunger before and after eating. They have this continuous urge to eat that is very different from the period of poor eating in the early years. In addition, they need fewer calories to maintain an appropriate weight. This is believed to be due to decreased muscle tone and bulk and lower physical activity.
It is important to provide the needed nutrients while restricting calories in order to maintain a healthy weight. Access to food must be limited and regular (preferably daily) exercise should begin as early as possible. Weight management should be individualised and may include weekly weighing, complete control of food intake and environmental barriers to food access (such as locks on kitchens).
Incomplete sexual development:
The small genitalia that characterise affected individuals are more easily identified in males, but affect both sexes. Males often have undescended testicles and a small, poorly delineated scrotum; females have small labia minora and clitoris. Pubertal development is typically delayed and incomplete, and fertility is extremely rare and has occurred only in females. Hormone treatment during adolescence may be recommended.
Intellectual disability:
Learning, social and cognitive development is delayed and impaired. Although there is wide variability in abilities most people with Prader-Willi syndrome function below what would be expected given their family background and the average IQ for people Prader-Willi syndrome is around 60, which is in the mild intellectual disability range. People with Prader-Willi syndrome may have other specific impairments affecting their social functioning, working memory, and their ability to change their attention from one task to another.
Speech and language difficulties:
The great majority of people with Prader-Willi syndrome develop spoken language and can communicate verbally. Cognitive capacity and probably also the extent of hypotonia may affect the development of these abilities and speech therapy may be helpful and the use of symbols and visual material may be valuable.
Balance and Coordination:
Fine motor skills (the use of hands and wrists to make precise movements) usually are well developed, while gross motor skills (relating to the use of the torso and limbs for example in running and for balance) remain limited.
High pain threshold and irregularities in body temperature control:
Most people with PWS are unaware of injury and infection because of blunted sensory mechanisms and reduced sense of pain. Unexplained high or low temperatures may occur and there is often insensitivity to environmental temperature. Complaints of pain should be taken seriously as when they occur they may indicate serious illness.
Scratching and picking:
Many individuals with Prader-Willi syndrome pick and scratch at sores and insect bites which, if not controlled, may become chronic sores and result in infection.
Behaviour, mental health and temperament:
Children with Prader-Willi syndrome can be loving and happy particularly in the early years. However temper outbursts and subtle changes, typically mood swings and behaviour difficulties may emerge over time. Some teenagers or adults with Prader-Willi syndrome can develop more serious mental health problems.
Other findings:
People with Prader-Willi syndrome may experience excessive daytime sleepiness and sleep apnoea, particularly if obese. Eye abnormalities such as strabismus (cross-eyed), myopia (near-sightedness) or amblyopia (lazy eye) are common.
Treatment and intervention
There is currently no cure for Prader-Willi syndrome, nor is there a drug that can be prescribed to alleviate all of the symptoms and there is no known treatment to lessen the drive to eat, although much research is being conducted in this area. However, the lives of people with Prader-Willi syndrome can be transformed through having a sound understanding of the syndrome and access to good informed care and support.
Treatment is primarily symptomatic and most importantly consists of:
- Early diagnosis, provision of information and support with interventions.
- Lifetime weight control through diet, environmental controls (limited access to food), and exercise.
- Growth hormone replacement therapy when available.
- Sex hormone replacement therapy when available
- Support strategies that seek to minimise behaviour difficulties and which support activities and social engagement that helps maintain wellbeing
With appropriate support and information and the effective management of specific aspects of the syndrome, people with Prader-Willi syndrome can expect to live healthy and increasingly long lives.
How a child with PWS develops
The pattern of characteristics associated with Prader-Willi syndrome is consistent among those affected by it, although there is significant variability in severity and not all individuals affected have every characteristic.
As a simplification, the syndrome is marked by distinctly different presentations in infancy compared to childhood or later in life.
Initially, a baby will present at birth with very low muscle tone resulting in a floppy baby (hypotonia), slightly low or normal birth weight and a poor suck. Subsequently there may be a failure to gain weight and grow well and delayed developmental milestones.
Both boys’ and girls’ genitals are often poorly developed at birth, and one or both testes are usually undescended in males. Because of the weak, limp muscles and poor suck, infants are almost always unable to nurse and often require special feeding techniques such as special bottles or tube feeding.
The milestones of lifting the head, sitting up, crawling, walking, and speech all tend to be delayed. On average, independent sitting is achieved at around 12 to 13 months, walking at 24 to 30 months, and tricycle riding at 4 years. The first word may appear around 21 months and sentences around 3.5 years. The early use of growth hormone and intervention from disciplines such as physiotherapy and dietetics is important at this early stage.
Early in life there follows a period of what appears to be normal eating behaviour and improvement in muscle tone and in physical activity. However, this in turn is followed by a phase that is usually marked by an increased appetite and often a compulsion to eat. This often occurs in toddlers or young children.
With the onset of this stage life becomes dominated by the child’s excessive appetite and drive for food. Individuals with Prader-Willi syndrome do not feel full after eating (lack a sense of satiety) what for others would be a normal or even excessive amount of food. If they have free access to food children and adults with Prader-Willi syndrome are known to eat large amount of food without becoming nauseated or having indigestion and many have never vomited.
This striving for food combined with a lower than normal calorie requirement, and often the decreased physical activity related to the hypotonia, results in rapid weight gain. If access to food is not supervised, severe obesity is very likely to occur and leading eventually to the consequences of obesity including: respiratory difficulties, heart disease, diabetes mellitus, severe swelling of the ankles and feet, sleep abnormalities and other problems. These health problems can be prevented with appropriate control of the food environment.
What is the treatment for PWS?
There is currently no cure for Prader-Willi syndrome, nor is there a drug that can be prescribed to alleviate all of the symptoms. As of this writing, there is no known substance that has been demonstrated to lessen the drive to eat, although much research is being conducted to find such a substance.
Treatment is primarily symptomatic and most importantly consists of:
-
Early diagnosis and intervention
-
Lifetime weight control through diet, environmental controls (lack of access to food), and exercise
-
Growth hormone replacement therapy, when available
-
Behaviour management , with consistent limit-setting
-
Special education and sheltered or supported employment
Early Diagnosis
Early diagnosis of PWS gives parents an opportunity to manage their child‘s diet, prevent or treat infantile failure to thrive, avoid obesity from the start, and improve behaviour. It may facilitate a family‘s access to critical early intervention services and help identify areas of need or risk. It allows families to know what to expect and institute appropriate preventative measures.
Weight Control
People with PWS have a flaw in the part of their brain that determines hunger and satiety that gives them a continuous urge to eat following their period of poor eating in the early years. In addition, they need fewer calories to maintain an appropriate weight. This is believed to be due to decreased muscle tone and bulk and lower physical activity. It is important to provide the needed nutrients while restricting calories in order to maintain a healthy weight. Access to food must be limited and regular (preferably daily) exercise should begin as early as possible. Weight management should be individualised and include weekly weighing, complete control of food intake, environmental barriers to food access (such as locks on kitchens) and diets acknowledging that fewer calories are required.
Growth Hormone
In recent years, numerous studies have demonstrated conclusively that growth hormone replacement therapy can very positively affect growth, body composition (the proportion of fat to muscle and bone), and activity level in people with PWS. It can also improve breathing and probably also speech and academic performance. Since it can improve body shape and physical abilities, it also improves self-image. However, growth hormone requires a daily subcutaneous injection, is expensive, and is not covered by all health programs in all countries..
Behaviour Management
Behaviour management is crucial for both weight and behaviour problems. Behaviour management should be oriented towards intervention and prevention. Consistent enforcement of limits by all caregivers (including parents, the wider family, teachers, and residential carers) is very important. For the best results, make a schedule, plan the day, avoid arguments and anticipate what issues may arise.
Special Education and Sheltered or supported Employment
Because of the developmental delay and intellectual disability combined with the behavioural problems, people with PWS require special assistance in school in order to learn as much as their abilities allow. Once they have completed school, they need assistance in finding employment that matches their abilities optimally, and supervision to control access to extra food and deal with behavioural outbursts when they occur. Adults with PWS who do not live with their family will require a residence that includes supportive supervision and accommodation to their dietary and behaviour control issues while simultaneously allowing them as much success and social interaction as possible.
What are the clinical features of PWS?
The pattern of characteristics associated with PWS is consistent among those affected by it, although there is significant variability in severity and not all affected individuals have every characteristic.
As a simplification, the disorder is marked by distinctly different presentation in infancy versus later in life.
Early phase
Initially, the neonate presents with slightly low or normal birth weight and poor suck with subsequent failure to gain weight and grow well, very limp muscles, and delayed developmental milestones. Genitals are often small in both sexes, and one or both testes are undescended in males. Because of the weak, limp muscles and poor suck, infants are almost always unable to nurse and often require special feeding techniques such as special bottles or tube feeding (gavage). The milestones of lifting the head, sitting up, crawling, walking, and speech all tend to be delayed. On average, independent sitting is achieved at around 12-13 months, walking at 24-30 months, and tricycle riding at 4 years. The first word may appear around 21 months and sentences around 3-1/2 years.
Second phase
There follows a period of normal eating behavior and improvement in muscle tone and activity. However, this in turn is followed by a phase that is usually marked by an increased appetite and often a compulsion to eat. This often occurs in toddlers or young children. Life becomes dominated by a voracious appetite and drive for food. Individuals with Prader-Willi syndrome apparently do not feel full (lack a sense of satiety). They can eat a tremendous amount of food without becoming nauseated or having indigestion – and many have never vomited. This striving for food combined with a lower than normal calorie requirement and, frequently decreased activity related to the hypotonia will result in rapid weight gain if not controlled externally, leading to obesity and eventually the consequences of obesity: respiratory difficulties, heart disease, diabetes, and other problems.
Diagnosis
Prader-Willi syndrome is usually suspected on the basis of the clinical signs and symptoms (see above) and confirmed by genetic testing. Clinical diagnostic criteria have been published in the medical literature and confirmed as accurate. However, because other disorders can have overlapping manifestations, the diagnosis should be confirmed by genetic testing, which is clinically available in many countries and is very accurate. Currently, the best test for Prader-Willi syndrome is called methylation analysis, and it is the best because it will be positive regardless of the genetic type. Other genetic tests can be used to determine the specific type, if that is desired, but it is not necessary to confirm the diagnosis.
Currently, IPWSO offers to cover the cost of genetic testing at the Baschirotto Institute for Rare Disorders in Italy for those living in countries where it is not available.
More information about PWS is available on request. Please enter your name and email address below.
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.
What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
Free Diagnosis
If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free testing.
Find support in my country
We have contacts in many countries and regions around the world.