TIGS recently hosted a one-day National Conference on Prader-Willi Syndrome (PWS), in collaboration with the Indian Prader Willi Syndrome Association and Manipal Hospital. The conference brought together clinicians, researchers, educators, caregivers, and patient advocates to strengthen understanding and management of this complex rare genetic condition.
Understanding PWS
Prader-Willi Syndrome is caused by the loss of function of paternal genes in the SNRPN region and associated loci. Clinically, PWS presents with weak muscles at birth (hypotonia) and feeding difficulties in infancy, followed by excessive eating (hyperphagia) and obesity in later childhood, alongside hormonal, cognitive, and behavioural challenges. Like many rare genetic diseases, there is currently no cure for PWS, and effective care depends on coordinated, lifelong, multidisciplinary management.
The conference featured expert insights spanning multiple specialties:
- Pulmonology & Sleep Medicine: Clinical guidance by Dr. Ilin Kinimi (Consultant, Manipal hospitals, Bengaluru)
- Endocrinology: Perspectives from Dr. Namratha Upadhya and Dr. Sham Kiran (Manipal Hospitals, Bengaluru)
- Child Psychology: Behavioural and developmental insights by Dr. Sushma Gopalan (Manipal Hospitals, Bengaluru)
- Education, Employment & Insurance: Practical pathways discussed by R. Anandhanayaki (NIPED) and Saujanya Tata (Nayi Disha)
- Genetics of PWS: Scientific overview by Gayatri Iyer (TIGS, Bengaluru)
Centering lived experience
A powerful highlight was the lived experience and achievements shared by Maahi Saxena, underscoring what is possible with the right support systems. The conference concluded with reflections on the way forward from Shikha Metharamani (President, IPWSA), emphasizing collaboration, awareness, and policy engagement.
Watch this space for more updates. The proceedings and key outcomes from the conference will be shared soon.
