Get inspired! IPWSO’s support for PWS events and projects across the globe. 

Argentina

The SPINE Foundation in Argentina provides continuous healthcare services and support programmes to 33 parents and families. They received funding to purchase sports and musical equipment for their Winter Camp. The programme  consisted of recreational activities conducted by physical educators and therapists who specialize in PWS. The event took place in the school holidays, as during this period parents can be particularly challenged to maintain the level of structure and routine that is required to best meet the needs of children with PWS. The Winter Camp took place in Buenos Aires and was organised in collaboration with the PWS Association Argentina.

The SPINE Foundation, in collaboration with RDC Tech UK, also received a microgrant to help fund a research project into AI driven tools to address misdiagnosis in PWS.

In a separate project, led by Dr Sofia Suco Valle, a microgrant enabled the development of a PWS Interdisciplinary Team Day Care Unit at the Children’s Hospital Ricardo Gutierrez, Pediatric Endocrinology Division, in Buenos Aires.

This project is designed to ensure that children with PWS receive truly holistic care, with better follow-up and earlier access to diagnosis and treatment. Dr Suco Valle highlighted that bringing services together through an interdisciplinary day clinic will make a real difference for families. By coordinating hospital visits, travel costs can be greatly reduced – an important benefit where expenses are often high – and families are more likely to keep up with appointments. This initiative showcases how a well-organised, interdisciplinary clinic can strengthen care and improve outcomes for children with PWS.

Brazilian Prader-Willi Syndrome Association (SPW Brasil)

SPW Brasil was founded in 2016 and is in contact with around 500 families, although they believe many more people remain undiagnosed. The Association was  delighted to receive funding to host its first SPW Brasil Symposium, the theme of which was  “New Perspectives of Prader-Willi Syndrome”. The symposium attracted delegates from all over Brazil and the lectures and workshops focussed on best practice, behavioural challenges, treatments, medication and the transitional years.

The lectures were also recorded and made available on YouTube, ensuring the symposium continues to have an impact by providing a long-lasting, accessible source of expert knowledge for the PWS community in Brazil and beyond.

PWSA Bulgaria

A conference grant has enabled this Association to bring together families and clinicans from across Bulgaria to the “National and International Conference on Growth Hormone Treatment After 18-Years of Age: Reality, Problems, Perspectives For Patients in Bulgaria”. The Conference took place in July 2024 and was organised by the Bulgarian National Alliance of People with Rare Diseases, Bulgarian National Association of Patients with Growth Hormone Deficiency, the  Association for Turner Syndrome and the Bulgarian Prader-Willi Syndrome Association.

The conference brought together families of children with rare diseases alongside the professionals who support them. Renowned PWS experts – Dr Charlotte Høybye, Professor Tony Holland, Dr Susanne Blichfeldt, and Dr Nikolina Yordonova – delivered engaging presentations and were later interviewed on Bulgarian television to discuss PWS, its symptoms, treatment options, and the experience of raising a child with the condition. This project highlights how hosting a conference can significantly increase public awareness of PWS, opening the door to broader understanding through media coverage.

PWSA Costa Rica

We were delighted to welcome the recently formed PWS Association of  Costa Rica into membership and to help fund the development of their website.

Laura, mother of Mariano commented:

“ASOPRAWI has been a dream come true for me. For many years, I longed to meet another family with a child who has Prader-Willi syndrome. The first time I shared with the founders of this association, it was truly a wonderful experience. I felt understood and found sisters who support me on this journey.

Their story is a powerful reminder of what can happen when families, professionals, and communities come together with a shared purpose. We are proud to support associations like ASOPRAWI as they grow, connect, and create meaningful impact for those living with Prader–Willi syndrome.

If your association is working to strengthen its community or launch new initiatives, we encourage you to apply for an IPWSO small grant. Together, we can make a real difference – one connection, one project, and one empowered family at a time.

PWSA China

PWS China has recently joined our IPWSO community. A grant from the IPWSO Conference Fund helped the Association deliver seminars for primary care physicians and PWS families in Hangzhou, Zheijang Province, and in Shanghai City. The focus was on early diagnosis and treatment, and the importance of accurate newborn screening. Speakers included endocrinologists, neonatologists, neurologists and professionals in respiratory medicine. The presentations were recorded and made available online, providing a valuable resource for the PWS community in the region.

PWSA Colombia

PWS Online and In-Person Therapeutic Care Training Programme: Carolina Fernández from Sincelejo, Sucre, Colombia, reflected on her experience of this training event, initiated by ASCPW – Asociación Colombiana Síndrome de Prader-Willi:

“As a therapist and participant of the Therapeutic Care Training Program, I must highlight that it was a comprehensive and multidisciplinary course, offering an excellent learning opportunity. Each session was carefully planned, integrating theory and practice based on the experiences of Prader-Willi patients, with committed support from the SPINE Foundation. The generosity of the professionals in sharing their insights in response to questions was invaluable. I sincerely thank the Colombian Association of Prader-Willi Syndrome for this extraordinary effort – a challenge accomplished with love and commitment. This experience will allow me to strengthen the care I provide to PWS patients, expand my therapeutic tools and strategies, and share the knowledge gained with other colleagues.”

This programme is a powerful example of how targeted training initiatives can build professional expertise, improve the quality of care, and ensure that knowledge about PWS is shared widely to benefit the broader community.

PWSA Egypt and Middle East

A microgrant enabled the expanding network of parents from Egypt and the Middle East to establish their own formal association – a vital step toward gaining official recognition and strengthening their voice.

This development later allowed the group to unite professionals, parents, and caregivers from Egypt and other Arabic-speaking countries and to host their first-ever  in-person and virtual conference, marking an important milestone for the region’s PWS community. This event took place in October 2025 and was supported by an IPWSO conference grant.

Hungarian Prader-Willi Association (HPWS)

HPWS was founded in 2019 and is in contact with around 50 families. The number of people with PWS is not officially known and there is little by way of social service support in Hungary. HPWS received funding to organise its first Summer Camp for children with PWS and their parents. This provided a much needed opportunity for children and young adults with PWS to meet and develop friendships, and for parents to share experiences and  learn about best practices.

India

Paediatric Endocrinology Team, Aster Hospitals, Bengaluru

Dr Jahnavi Muralikrishnan, Fellow in Paediactric Endocrinology, and the team at Aster CMI Hospital, undertook a research study that provided important insights into the effectiveness of a patient education booklet, which was produced in four native Indian languages – Kannada, Tamil, Hindi and Telugu. The booklet aims to improve the knowledge, attitudes and practices of families of children with PWS. The team  collaborated with the Indian PWS Association and delivered a hybrid conference for health professionals and families in Bengaluru. The conference addressed, amongst other topics, sleep disorders, diet and nutrition, psychological issues and orthopaedic problems. Sessions were recorded and later shared.

Kenya

When Dr Menbere Kahssay, Paediatric Endocrinologist, called for support to raise awareness of PWS at the Paediatric Endocrinology Society of Kenya’s Annual Conference in Mombasa (April 2025), the IPWSO Grants Committee was pleased to help make it happen.

Together with Dr Constanze Laemmer and Dr Charlotte Høybye, Dr Kahssay hosted the IPWSO exhibition stand and delivered insightful presentations to a highly engaged clinical audience. This collaboration not only elevated understanding of PWS among healthcare professionals in the region but also strengthened international connections within the PWS medical community.

Malaysia: Taylor’s University Team in collaboration with PWS Malaysia

Wan Puspa Melati Wan Halim, Clinical Sociologist, Associate Professor and Head of Department at the School of Liberal Arts and Sciences at Taylor’s University, Malaysia, and her team, received microgrant funding to establish a face-to-face support group and a WhatsApp group that will provide a safe and supportive space for parents to share their experiences, gain knowledge, and build coping strategies to manage their children in the critical transitional teenage and young adult years. Parents often struggle with managing issues around relationships, sexual desires, tantrums and aggression. The “PWS Circle: Empowering Families, Energising Lives” aims to equip parents with practical skills and knowledge and help empower them to take charge of their lives and impact others positively. The support sessions are facilitated by a trained clinical sociologist, psychologist and a social worker. The university is delivering this project in collaboration with the PWS Malaysia Association.

PWSA Mexico – Fundación María José

“This grant will help us deliver our 7th Annual Meeting of Mexican Prader-Willi Families. (September 2024 – Hidalgo). IPWSO has been a support in terms of information, guidance, and an ally for Fundación María José-Prader Willi México to provide better service to our  PWS community in México. Thank you, IPWSO!
Josefina Pérez Rodríguez, Director General, Fundación María José, A.C – Prader Willi México.

IPWSO was pleased to contribute to Josefina and her team’s efforts to strengthen and empower families through connection, learning, and shared experiences. Fundación María José has also received microgrant funding to design bespoke PWS games that will help raise awareness of the syndrome and educate children with PWS and their peers through fun and engaging activities. Together, these initiatives are helping to build a more informed, connected, and confident PWS community in Mexico.

PWSA New Zealand: Transition Symposium – 2024

PWSA (NZ)’s first Transition Symposium brought families and professionals together to address the challenges young people with PWS face when moving into adulthood. Over two focused days, experts shared practical guidance on health, mental wellness, legal rights, and disability support, helping families feel more prepared and informed.

The event also strengthened collaboration with service providers and highlighted key advocacy needs. A new Transition Information Pack, developed from this project, will soon support families and professionals nationwide – creating a lasting, practical resource beyond the Symposium itself.

Nigeria

Dr Elizabeth Oyenusi, Associate Professor of Paediatric Endocrinology and member of our Famcare Board, is leading efforts to raise awareness of PWS across Nigeria and was pleased to have received support through the IPWSO Grants Fund. Dr Oyenusi is pictured here presenting at the Annual Scientific Conference of the Endocrine and Metabolism Society of Nigeria (EMSON) in Lagos in September 2025. Her co-presenter, Dr Oluwakemi Ashubu, shared the story of the first genetically confirmed PWS case from Ibadan, Nigeria.

Dr Oyenusi reflected: “From the moment participants saw the session on the programme, many were curious about PWS and wondered whether Nigerian children were truly affected. The confirmed case was a powerful reminder that these children, often unfairly and incorrectly labelled,  do exist. Attendees received crucial information on when to suspect PWS, the availability of free screening, the excellent resources on the IPWSO website and the support that is provided through paediatric endocrinology services in Nigeria.”

Dr Oyenusi has also received funds to kick start a series of online CPD events on PWS to be hosted by herself and Dr Menbere Kahssay, Paediatric Endocrinologist, Kenya.

These initiatives are vital steps in increasing awareness, improving early diagnosis, and ensuring children with PWS in Sub-Saharan Africa receive the care and support they need. By sharing knowledge directly with healthcare professionals, our PWS community is helping to break misconceptions and to foster a stronger, better-informed society.

Pakistan: Aga Khan University Hospital, Karachi

Sabeen Iqbal, mother of a 32-year-old woman with PWS, and Salman Kirmani, Geneticist and Paediatric Endocrinologist, collaborated to deliver a conference in their home country of Pakistan. This in-person event, originally planned for 2022, was postponed due to COVID-19. Sabeen and Salman organised the conferenec to help educate healthcare professionals about the needs of people with PWS. Unfortunately, most Pakistani children with PWS do not receive a timely diagnosis and even when they do, they are not offered treatment by a multi-disciplinary team. Even though the Pakistani medical system has healthcare professionals that are capable of providing this care, they have never been trained in the special needs of people with PWS, and the family-centric approach that aims to provide a high quality of life for these individuals. This conference will build upon the knowledge delivered in an earlier on-line event  held in which drew upon resources from the IPWSO ECHO® library.

PWSA – Portugal

SPW Portugal received funding in 2024 to support their vibrant summer camp, where families came together to enjoy fun-filled days, relax in a supportive environment, and share meaningful quality time. The camp created a warm, joyful space for connection, laughter, and unforgettable memories.

Romanian Prader-Willi Association (RPWA)

RPWA received funding to support a hybrid conference on “PWS and Behaviour Management Strategies”. The conference took place in Timisoara, Romania and attracted over 100 health professionals, family members and people with PWS from across Europe. It focussed on topics including quality of life, challenging behaviours, psychiatric problems, cognitive impairment, best practice models, early intervention, and the design of services to meet the behavioual and mental health needs of children and adults with PWS.

A key outcome of this project is the increased knowledge and awareness that it generates – sharing insights, strengthening care practices, and inspiring lasting improvements for the PWS community.

PWS Support Group of South Africa

Knowledge about PWS in South Africa is considered to be poor. The PWS Support Group of South Africa is in contact with around 84 families through Facebook, but in a population of 56 million, they estimate a prevalence of PWS of around 3,700, with less than 500 people with an actual diagnosis  Knowledge amongst professionals is slowing improving. The PWS Support Group received funding to hold an in-person workshop in Cape Town which aims to raise awareness of PWS amongst parents and health and allied professionals.

PWSA Thailand

PWS Thailand currently has 145 active members. The Association received funding to support their Annual Meeting, which has grown year on year, and to print PWS educational materials. 

Vietnam

Ms Dinh Thi Thanh Van from the Morning Star Center in Hanoi, Vietnam, received support from the IPWSO Grants Fund to attend the 6th International PWS Professional Providers’ Conference in Berlin. On her return, she enthusiastically shared her new knowledge with colleagues, as seen in this photo, helping to build local expertise and strengthen care for individuals with PWS.

This is a powerful example of how the IPWSO Grants Programme enables professionals to access global best practice and bring it back to their communities – amplifying skills, improving understanding, and driving meaningful, long-term impact for people living with PWS.