The Centre for Health Ecologies and Technology (CHET) at the International Institute for Art, Culture and Democracy (IIACD), Bengaluru presented its third Blue Ribbon Rare Diseases Symposium, Film Festival and Art Camp on 14, 15 and 17 March 2018 under its Medical Humanities and Bioethics Initiative (MHBI) and its Autism and Rare Disease awareness (ARDA) outreach programme.

Blue Ribbon Rare Disease Symposium 2018 brought various rare disease experts including clinicians, researchers, patients, families, other caregivers, advocates, policy makers and industry experts on a common platform. Following the World Rare Disease Day theme of “Research,” this symposium focused on rare diseases, rare cancers and disseminates new knowledge on research, treatment and policy. Speakers included internationally reputed experts and thought leaders from clinical medicine, medical research, medical technology, health informatics, ethics and law. Our Chief Guest Dr. Kiran Mazumdar-Shaw, CMD BIOCON Ltd. and Chairperson of ABLE & VGBT, who has been active in initiating the Rare Disease Policy for Karnataka and the regulatory pathways for Orphan drug development in India inaugurated the digital platform OPFORD – open platform for rare diseases.

Blue Ribbon Art Camp 2018 was designed as a patient-centric creative and therapeutic activity for 20 children and young adults (aged 10-20) with rare diseases to explore art and express their lived experiences of their disease.

The film festival showcased films and documentaries which captured the lived experiences of patients and families living with rare diseases.

Launch of Huntington Disease Society India at NIMHANS, Bengaluru – 16, 17 August 2019

CHET was one of the partners for the inaugural event of the Huntington Disease Society India at NIMHANS