Summit Meetings
Connecting the international PWS community through dialogue and action.
IPWSO Summit Meetings provide an international online forum at which key issues of relevance to people with PWS and their families, and our international community, will be discussed. People living with PWS and their families, clinicians, researchers, professional caregivers, PWS association leaders, pharmaceutical company representatives, and others with a personal or professional interest in PWS are invited to participate.
Our meetings are open to all and we look forward to lively discussions among our speakers and audience.
Next meeting: Global Perspectives on Stigma: Understanding Intellectual Disability and PWS Across Cultures
Wednesday 12 November, 2025, 1pm London, UK time
Click here to convert to your local time. Meetings are 90 minutes.
This meeting will explore how intellectual disability, particularly in the context of PWS, is perceived and experienced across different countries. We will discuss cultural attitudes, societal stigma, and how these impact diagnosis, care, inclusion, and advocacy for people with PWS and their families worldwide.
Click the “RSVP” button below to let us know you plan on attending, and to add the event to your calendar.
Our speakers
IPWSO strives to make collaboration in our community as accessible as possible. If you would like to take part but feel you may experience difficulty with language or any other aspect of communicating with the group, we encourage the support of interpreters, family members or caregivers. Please let us know if you would like to plan any special arrangements and we’ll be delighted to support this.
Dr. Molelekeng Sethuntsa is the Chief Clinical Psychologist at Steve Biko Academic Hospital in Pretoria, South Africa. With over a decade of experience in clinical practice, she has been registered with the Health Professions Council of South Africa (HPCSA) as a Clinical Psychologist in Independent Practice since 2010.
Her clinical and academic interests lie in the field of Health Psychology, with a particular focus on rare diseases. She is especially dedicated to advancing understanding and treatment of Prader-Willi Syndrome.
In pursuit of this commitment, she completed her doctoral research titled: “The Development of a Therapeutic Approach for the Treatment of Individuals with Prader-Willi Syndrome and Their Primary Caregivers.” This study addressed the urgent need for tailored psychological interventions that support both individuals with PWS and their care givers, contributing significantly to the scarce body of literature in this area in South Africa.
Dr. Carolina Cárdenas Vargas holds a master’s degree in Rare Diseases from the University of Valencia, Spain. She is a specialist in Neuropsychology and a psychologist from the Pontifical Javeriana University in Cali (Colombia). Teacher postgraduate courses in Neuropsychology and Neurorehabilitation. Honorary Member of the Colombian PWS Association. Member of the International Foundation for Care and Support (FICA). Researcher with the GIDEAL research group and the SYNGAP Research Fund in the United States. Recognized by the Colombian Federation of Rare Diseases (FECOER) as a leading professional in Colombia for the care of patients with rare diseases. Is also a leader of the Latin American Network of PWS Specialists.
Since 2010, she has been involved in PWS research, clinical care for patients and families, knowledge dissemination, and psychosocial support. Author of research articles published in scientific journals and programs for the care of patients with PWS. For more than a decade, she has been a passionate and committed volunteer in the care of PWS patients.
Sabika Shaban is a parent of two neurodivergent children, her daughter with PWS and her son with autism. She is a community builder, mentor, and founder of the Qatar Disability Resource (QADR), a platform that connects stakeholders in Qatar to information, resources, and human connections, most especially for families raising children with disabilities in the country.
Sabika is a researcher focusing on disability policymaking and family experiences of disability, specifically in the Arab Gulf context. She is affiliated with Hamad Bin Khalifa University (HBKU) and is presently pursuing her PhD in Education at the University of Cambridge. Sabika also serves on multiple boards and taskforces in the country that work on fostering inclusion for persons with disabilities (PWDs). She uses her research, QADR, and diverse speaking and training opportunities to raise awareness and advocate for progressive action to advance the rights of PWDs in Qatar.
Dr. Parul Goel is a mother of a 13 year old daughter diagnosed with Prader-Willi Syndrome. She completed her post graduation in dentistry and is presently in professional practise in New Delhi, India. Being a medical person it was easy to understand all the details of disease. Reliable medical literacy free from any societal stigma helped the family in getting a diagnosis early and seek follow up treatment.
Previous Summit Summaries
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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.
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.
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We have contacts in many countries and regions around the world.