- The primary aim of World Rare Diseases Day (WRDD) is to raise awareness not only among the public but also among the medical community to improve access to quality treatment and healthcare.
- The Centre for Health Ecologies and Technology (CHET) at the International Institute of Art, Culture and Democracy (IIACD) presents the Blue Ribbon Art Exhibition and Film Festival under its Autism and Rare Diseases (ARDA) outreach programme.
- The Art Exhibition aims at showcasing the artworks of children and young adults with rare diseases while the film festival provides a glimpse into the nuanced lives of people and families living with rare diseases. The Blue Ribbon Festival intends to celebrate diversity and symbolizes hope for rare disease communities.
What is World Rare Diseases Day?The last day of February each year is marked as World Rare Diseases Day (WRDD) in honor of all people living with rare diseases.
- Chief guest and speakers accepting the draft framework for a state rare disease policy
- Chief guest and speakers viewing the artworks by children and young adults with Thalassemia
- Chief guest Dr Kiran inaugurating the Blue Ribbon Art Exhibition with Neelesh Ganesh (person with Aspergerís).
Rare diseases are not so rare as it seems to be. Globally, rare diseases kill more people than cancer, HIV and hepatitis put together. There are nearly 7000 documented rare diseases across the world and 80% are genetic in origin. Almost 50% of people affected include children. Thirty percent of children affected by rare diseases do not live beyond the age of 5 due to lack of timely diagnosis, treatment and availability of drugs. Across the world, rare diseases are a medical challenge in terms of diagnostics, treatment, drugs and most importantly access. †††††††††††
‘Rare diseases are not so rare as it seems to be. There are about 7000 rare diseases globally that kill more people than cancer, HIV and hepatitis put together.’
AdvertisementThere are nearly 70 million people with rare diseases in India. In the year 2014, Karnataka state had a rare disease population of 3.7 lakhs.
The most prevalent and frequently occurring rare diseases in India are Thalassemia, Sickle Cell Anemia and Hemophilia.
WRDD is a platform to bring together communities of people with the rare disease to advocate for better access to quality healthcare including better diagnostics, treatment and affordable drugs.
This year's theme is "Patient Voice" which is echoed by the Centre for Health Ecologies and Technology (CHET) through this art exhibition and film festival 2016.
Blue Ribbon Art Exhibition and Film FestivalThe 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 on 1 March, 2016 at the National Gallery of Modern Art, Bangalore under its Autism and Rare Diseases (ARDA) outreach programme. ARDA aims to raise awareness and sensitize communities on rare diseases through art, film and other creative media. Through its research, advocacy and practice, CHET seeks to improve access to quality healthcare for people and families with rare diseases and other communities, which have been excluded from mainstream health systems.
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. Every visitor to the festival was given a blue ribbon as a show of unity with rare disease communities.
The Blue Ribbon Art Exhibition showcased the creative artworks of children and young adults below 20 with rare diseases. It aimed at raising awareness of their rare diseases and generate hope. The artworks communicated 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. Some of the posters and artworks in this exhibition are a call-to-action to step up therapeutics and curatives especially in gene therapies. 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) have also been included. The artworks of Neelesh Ganesh, a high-functioning individual with Asperger's syndrome drew much attention and admiration from the audience.
The aim of the Blue Ribbon Film Festival was to share experiences of people with rare diseases with the public. The curated films gave an overall introduction to rare diseases such as Hemophilia, Thalassemia and Pompe disease. They captured the nuanced experiences of children, adults and parents living with rare diseases. The curator's intent is to avoid portraying the tragic and to instead present the colorful and diverse experiences of people with rare diseases. The films combine a blend of the artistic and the experiential to convey the rich lives of people living with rare diseases and negotiating different realities. Some of the films included the award winning documentary "The Indomitable Spirit" by Maya Chandran and the Hollywood blockbuster "Extraordinary Measures" starring Brendon Fraser and Harrison Ford. This film captures the struggles of a father searching for a cure for his two children who are fighting Pompe disease.
The event was inaugurated by Dr. Kiran Mazumdar-Shaw, CMD of Biocon Limited. Significantly, the draft framework for a rare disease policy was presented to Dr. Sowjanya, Director of the National Health Mission, Karnataka. For the first time in India, such a framework is being presented to the government to look into a public policy for people with rare diseases to support diagnostics, treatment and availability of affordable drugs.
This event also provided updates on research and treatment and a platform for people with Hemophilia, Thalassemia, DMD, Primary immunodeficiency (PID) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), care providers and care givers to share their experiences, desires and hopes. The larger goal of the Blue Ribbon Art Exhibition and Film Festival on rare diseases is to communicate the diversity and beauty in the lives of people with rare diseases.