The Centre for Health Ecologies and Technology (CHET) at the International Institute of Art, Culture and Democracy (IIACD) presented the Blue Ribbon Art Exhibition and Film festival under its Autism and Rare Diseases (ARDA) outreach programme on 1 March 2016. The curators, designers and other organizers of the Blue Ribbon Art Exhibition and Film Festival at CHET were inspired by Global Genes Project’s Blue Denim Ribbon which is universally worn on Global Rare Diseases Day, celebrated on the last day of February every year, as a symbol of hope for people fighting rare diseases and to help raise awareness. 

The event was inaugurated by Dr. Kiran Mazumdar-Shaw, CMD of Biocon. Dr. Usha Kini, Professor of Pathology, St John’s National Academy of Health Sciences who has been researching Hirschsprung disease delivered the keynote. The draft framework for a state rare disease policy was presented by Prof. Vijay Chandru (Hon. Director of CHET) to Smt. Sowjanya – Director of the National Health Mission, Karnataka, Dr. Kiran Mazumdar-Shaw and Dr. Usha Kini. 

The Blue Ribbon Art Exhibition showcased the creative artworks of children and young adults below 20 with rare diseases. The artworks communicateed the personal lived experiences of the children and adults with rare diseases such as Thalassemia, Hemophilia, Duchenne Muscular Dystrophy (DMD) and children with Autism and developmental disabilities. Eminent Artist Balan Nambiar reviewed and prepared the comment on the artworks for this exhibition.

In this event, CHET partnered with several rare disease patient advocacy associations in Bangalore – Hemophilia Society, Bangalore Chapter, Thalassemia Society, Bangalore, Dystrophy Annihilation Research Trust (DART) and Rotary-TTK Blood Bank in the art exhibition. Artworks of children with Autism and developmental disabilities from Sajjan Rao Vidya Samsthe, Bangalore and Assisted Living for Autistic Adults (ALFAA) were included.

This event provided a platform for updates on research and treatment and a platform for people with Hemophilia, Thalassemia, DMD, PID and CIDP, care providers and care givers to share their experiences, desires and hopes. This sharing session was moderated by Dr. Vikas Sharma, CMO or Quintiles India. 

The Blue Ribbon Film Festival curated by Dr Namitha A Kumar included award winning films such as “The Indomitable Spirit” by Maya Chandra and “Extraordinary Measures” by Tom Vaughan and provided an introduction to a few rare diseases such as Hemophilia, Thalassemia, DMD and Pompe disease. The films captured not just the pain, trials and tribulations, but also the joys, victories and future hopes of people with rare diseases and their families. The larger goal of the Blue Ribbon Art Exhibition and Film Festival on rare diseases was to communicate the diversity and beauty in the lives of people with rare diseases.

CHET plans to continue the Blue Ribbon Festival for Rare Diseases as an annual event.