Summit on Global perspectives on stigma
Global Perspectives on Stigma: Understanding Intellectual Disability and PWS Across Cultures
November 2025
This meeting explored how intellectual disability, particularly in the context of PWS, is perceived and experienced across different countries. We discussed cultural attitudes, societal stigma, and how these impact diagnosis, care, inclusion, and advocacy for people with PWS and their families worldwide. The presentations from this meeting are available below.
Presentations
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.
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