CHET NEWS AND EVENTS
MHBI
MHBI focuses on humanizing healthcare and bringing patients to the forefront. MHBI's Blue Ribbon platform provides clinical updates, shares medico-legal and ethical concerns and centralizes the voices of patients, families and caregivers. This unique platform in collaboration with ARDA also enables creative opportunities for film-makers, artists and rare disease communities to participate and generate awareness on rare diseases.
- Blue Ribbon Rare Disease Symposium and Film Festival 2017 at NGMA Bengaluru
- Blue Ribbon Art Exhibition and Film Festival 2016 at NGMA Bengaluru
ARDA
ARDA’s goal is to generate awareness of Autism and other rare/neglected diseases/disorders through its workshops, exhibitions, film screenings and art camps. ARDA in collaboration with MHBI facilitated the first Blue Ribbon Film Festival and Art Exhibition in 2016 to generate awareness of rare diseases and autism. In 2017, ARDA in collaboration with NGMA Bengaluru facilitated the first therapeutic Blue Ribbon Art Camp for rare disease patients and families. In 2010, ARDA team at IIACD collaborated with Autism Society of India and organised WAAD 2010 events which included an exhibition of paintings and poetry by people with Autism.
- Blue Ribbon Art Camp 2017 in collaboration with NGMA Bengaluru
- Blue Ribbon Rare Disease Symposium and Film Festival 2017 at NGMA Bengaluru
- Blue Ribbon Art Exhibition and Film Festival 2016 at NGMA Bengaluru
- WAAD 2010
PHRPP
Our Public Health Research, Policy and Practice team closely monitors national and state policies relating to health, genetics and rare diseases. We engage in policy analysis and policy development for evolving robust healthcare for rare and orphan diseases.
Blue Ribbon Rare Disease Platform
The Blue Ribbon platform is a space to provide clinical updates, share medico-legal and ethical concerns and centralize the voices of patients, families and caregivers. The Blue Ribbon platform also provides creative space for sharing films and art on rare diseases.
- Blue Ribbon Art Camp 2017 in collaboration with NGMA Bengaluru
- Blue Ribbon Rare Disease Symposium and Film Festival 2017 at NGMA Bengaluru
- Blue Ribbon Art Exhibition and Film Festival 2016 at NGMA Bengaluru
- Medindia article on Blue Ribbon Rare Disease Symposium, Film Festival and Art Camp 2017
Other Rare Disease News & Events
CHET takes an inclusive approach to all rare diseases and believes that every rare disease must be given equal importance to strategize best health care and practices. We participate in rare disease events to advocate for the cause and raise public awareness.
- India needs a National Policy on Thalassemia
- India needs to Revamp its Medical Education to include Rare Diseases
- Karnataka establishes Mandatory Thalassemia Screening for all Pregnant Women
- CHET participates in World Immunology Day 2017
- CHET Director runs for Duchenne’s Muscular Dystrophy in Cubbon Park (2016)
- CHET Research Director runs for Thalassemia Day (2016)
- CHET team participates in DMD awareness day at DART (2016)
CHET Rare Disease Communications
CHET engages in producing high-quality communications in health care, health policy, rare diseases, human-interest stories and related topics. Health communications is especially important in India where there is a low level of public health awareness and practically no awareness of rare or orphan diseases. This is where CHET adds value by bringing out technical articles and human stories addressing the gap in rare disease communications.
- Misaligned Stakeholders and Health System Underperformance
- World Down Syndrome Day 2017
- World Rare Disease Day 2017
- Significance of the Disability Bill and Rare Diseases
- Rare Patients with Sickle Cell Live Twice the National Average
- DART Lab's Duchenne Muscular Dystrophy Awareness Week
- Pope Calls for Support to Chronic and Rare Disease Patients
- World Sickle Cell Day 2016
- Basics of Rare Diseases
- HCV Drug Treatment
- Shortage of Crucial Thalassemia Drug 2016
- International Clinical Trials Day 2016
- World Thalassemia Day 2016
- CHET helps draft Karnataka’s rare disease policy framework - the first in India
- CHET Research director, Dr. Namitha Kumar's personal narrative wins first place in GBF's The Wonder of Blood - Saving Lives in Asia Contest
- Challenges and Opportunities for the Rare Diseases Community in India (June 2014)
CHET in the News
- Rare Diseases and High Medical Expenses
- Draft policy on rare diseases seeks to make diagnosis, treatment accessible
- Learn about rare diseases at art exhibition
- Policy on rare diseases will make treatment affordable, inclusive
- Blue Ribbon Art Exhibition and Film Festival 2016
- Blue Ribbon Art Exhibition and Film Festival - World Rare Diseases Day 2016
- Blue Ribbon Rare Disease Symposium, Film Festival and Art Camp 2017
- DART Lab's Duchenne Muscular Dystrophy Awareness Week
Rare Disease Documentaries and Films
The human brain is hardwired to think in stories rather than dry facts and figures. Stories engage our emotions and enable deeper memory patterns. CHET brings out human interest stories of people and families living with rare diseases through vibrant documentaries and films. We encourage our audience to make a deeper connection with the “human” element of illness experiences through our list of curated films and documentaries.
- The Indomitable Spirit - Directed by Maya Chandra (2015) [15:52]
"The Indomitable Spirit" directed by Maya Chandra is one of India’s first documentary films chronicling snatches of lives of children and adults with rare diseases. The film captures the complexities of life with a rare disease in India from the diagnostic odyssey to the difficulty in finding treatment protocols, the lack of a rare disease policy and the financial burden on families. - Documentary on Mental Health - Directed by Maya Chandra (2015) [22:19]
This documentary is produced for the Richmond Foundation which works towards making life meaningful for people with psychiatric disorders.