Blue Ribbon Rare Disease Symposium, Film Festival and Art Camp 2017

Highlights:

The Blue Ribbon platform has been created by the Centre for Health Ecologies and Technology (CHET), Bangalore, to focus on topics related to rare diseases
It is a platform to bring together different aspects of rare diseases from clinical and research updates to the lives of those with rare diseases

The Blue Ribbon rare disease symposium, film festival and art camp was organized to improve access to quality health care for people and families with rare diseases.

Blue Ribbon Rare Disease Symposium

The Centre for Health Ecologies and Technology (CHET) at IIACD, Bengaluru presented its second Blue Ribbon Rare Diseases Symposium and Film Festival on 17th & 18th March under its Medical Humanities and Bioethics Initiative (MHBI) and its Autism and Rare Disease Awareness (ARDA) outreach programme. Through its advocacy, research and practice, which include rare disease policy frameworks, seminars, symposiums, art exhibitions and camps, film screenings and other creative media, CHET seeks to improve access to quality health care for people and families with rare diseases, and raise awareness about these diseases and the lived experiences and needs of such patients.

Blue Ribbon Art Exhibition and Film Festival - World Rare Diseases Day 2016
The last day of February each year is marked as World Rare Diseases Day (WRDD) in honor of all people living with rare diseases.

‘The Blue Ribbon is the first of its kind platform to assemble different aspects of rare diseases from clinical and research updates, with the purpose of raising awareness on these diseases.’

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Globally, there are 7,000 rare diseases. They are considered rare as the numbers affected by each disease are small. Although one report states that there are 452 rare diseases in India, we currently lack clarity regarding how many of these 7000 rare diseases affect the Indian population. Collectively there are nearly 70 million affected people in India. The accepted definition of rare diseases in India is 1 in 4000. This definition is flexible as more data on rare disease prevalence and incidence continues to be collected.

We have been inspired by the Blue Denim Ribbon of the Global Genes project. A symbol of hope for people fighting rare diseases, the Blue Denim ribbon is worn on Global Rare Diseases Day, which is the last day of February. Events focused on rare diseases awareness and support are also organized globally throughout the month of March.

The aim of the two-day Blue Ribbon Rare Disease Symposium 2017 organized by CHET at NGMA Bengaluru was to share knowledge of innovative research and practice in the rare disease sector in India. The symposium speakers included people with rare diseases, clinicians, researchers, medical ethicists and other experts from leading research organizations, institutes, private industry, state and private sector hospitals as well as representatives of non-profit societies and organizations working with rare diseases patients. Internationally reputed experts and thought leaders from clinical medicine, medical research, medical technology, health informatics, medical ethics and law, were all brought together.

First Steps for a Rare Disease Policy in India
Globally, there are 7000 rare diseases and counting. In India, there are nearly 7 crore people affected by a rare disease.

The two-day session began with the inauguration by Dr. Sowmya Swaminathan, Director-General, Indian Council of Medical Research (ICMR), and Dr. Ajaikumar, Chairman and CEO, Healthcare Global Enterprises Ltd. The book “Genomic Quirks” authored by Dr. Ramesh Hariharan, CEO of Strand Life Sciences was released by Dr. Ajaikumar. The book presents seven case studies of disorders linked to genes.

The symposium speakers presented expert knowledge on carrier and new-born screening, state of the art diagnostics, treatments and care of rare diseases. Day 1 began with a session that was kick started with Dr. Vani Ravikumar, Head of RV Metropolis Lab, Bangalore, presenting the common diagnostics and lab tests for hemoglobinopathies like thalassemia and sickle cell anemia. This was followed by Prof. Upendra Nongthomba speaking on rare neurogenetic disorders and different approaches to diagnostics and therapy. Prof. Nongthomba interestingly touched upon alternative medicines for neurological disorders. Dr. Ashraf Mannan, Chief Medical Geneticist at Strand Life Sciences outlined the diagnostics of rare diseases using new generation sequencing multi-gene panels. This session was concluded by Dr. Rajani Battu, Head of ophthalmology, Aster CMI hospital, speaking on the rare diseases of the eye. The session on newborn screening, carrier detection and genetic counseling was presented by Dr. Radha Ramadevi, pediatric geneticist, Rainbow hospital, Hyderabad and Ms. Arya Shambhavi, genetic counselor at Strand Life Sciences. Dr Alok Bhattacharya from JNU spoke on National policy on finding cures and management of rare disorders and gave us a roadmap for taking rare diseases forward in India. In continuation of the state’s efforts in rare diseases, Dr Meera Varadarajan, Hematologist at Victoria hospital, Bangalore briefed the audience on the efforts of the government to create a comprehensive care and crisis centre for hemophilia with free provision of factor.

World Rare Disease Day 2017
The 10th annual Global Rare Disease Day is being celebrated each year on the last day of February. This year it is found to focus on the key theme being “Research.”

Day 2 of the symposium provided hope for many patients, parents, families and friends of rare diseases as the day began with a discussion of gene therapy futures for bleeding and blood disorders by Dr Alok Srivastava, hematologist and stem cell researcher from CMC, Vellore. Dr Sunil Bhat, pediatric hematologist from Narayana Health, Bangalore followed up with advances in bone marrow transplantation. The day progressed with discussion of rare disease registries by representatives of various patient groups. The patient interaction session was the highlight of the day as patients from diverse rare disorders like osteogenesis imperfecta, muscular dystrophy, PID (primary immune deficiency), thalassemia and hemophilia shared their stories of hope, faith and courage. The session on ethics and law delved into legal strategies to look at health as a right as the speaker Rahul Matthan, Partner at Trilegal and writer at LiveMint. An interesting case of treatment for a boy with Gaucher’s disorder settled by the Delhi HC using Article 21 of the constitution outlining the “right to life” was discussed. The symposium concluded with Dr Olinda Timms, Advisory Board Member, CHET discussing ethical concerns in rare diseases.

Blue Ribbon Film Festival

Test Your Knowledge on Rare Diseases
Rare or orphan diseases are the least understood of all the categories of chronic diseases. Rare diseases are more common than projected and globally they take away more lives than cancer and HIV combined.

Globally around 350 million people are estimated to live with a rare disease. Currently, there are 7000 rare diseases with newer ones being discovered each year. 80% of rare diseases have a genetic origin. Rare diseases may be single-gene disorders or multiple- gene disorders. Almost 50% of those affected are children and 30% of these children will not live beyond the age of 5. It takes nearly 7 years to diagnose a rare disease. 95% of rare diseases do not have a cure.

The Blue Ribbon Film Festival was planned as a platform to showcase films and documentaries on rare diseases, aimed at raising awareness on the “lived experiences” of people with rare diseases. The idea is to humanize rare diseases and take it beyond the medical to really understand how people live out their lives and manage their condition. The film festival was curated by Pavitra Chalam, Founder of Curley Street Media. The films screened include the Hollywood blockbuster “Extraordinary Measures” starring Brendan Fraser and Harrison Ford. Other films included moving documentaries on children with Rett syndrome, transverse myelitis, journey of the hemophilia society Bangalore and Anshu – an award-winning documentary on Thalassemia.

A documentary that moved people to tears was “Moving Minds,” an Indian film documentary, directed by Bharat Chand on the stories of children in Kerala, suffering from osteogenesis imperfecta and thereby sustaining multiple fractures throughout their lives. The film documents their struggles with education and their dreams and hopes for the future. The film festival was appreciated by doctors and researchers who felt this is the other side of rare diseases which they rarely see.

Blue Ribbon Art Camp

The Blue Ribbon Art Camp 2017 was designed as a patient-centric creative and therapeutic activity for 30 children and young adults (aged 10-20) with rare diseases to explore art, and express their lived experiences of health and sickness. The event was inaugurated by Chief Guest Smt. Ranjana Ramchander, a talented artist whose paintings are purchased by collectors across India, in Dubai, Singapore and other countries. She is also the co-founder of Hemophilia Society, Bangalore Chapter. The other chief guest included Dr. Ramesh Hariharan, CEO of Strand Life Sciences, and artist Bharath V, a talented young visual artist who facilitated the art camp.

The children were from a diverse set and represented Hemophilia, Thalassemia, PID, Autism spectrum disorders and other developmental disorders. Around 20 children participated enthusiastically and expressed their personalities with bright colors. They also had fun with a session of clay modeling. The earthy, cool clay brought out the hidden sculptor in all the children as they gave way to their imagination.

The overall concept of the Blue Ribbon Rare Disease platform is not just to provide clinical information about rare diseases but also humanize and put a face to these people who are a part of our communities.

Source-Medindia