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.
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.
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.’
There 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
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
Ribbon Art Exhibition and Film Festival
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 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
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. References: