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Dr. APJ Abdul Kalam’s inaugural address at the first National Conference on Raising the Awareness on Rare Diseases at Hyderabad, 20 th March 2015

‘Genetic intervention can have long term impact and change the natural history’

Friends, I am happy to participate at the inauguration of the National Conference on Raising the Awareness on Rare Diseases. My greetings to all of you. When I am with you friends, I would like to share a few thoughts on “Alone we are rare – together, we can make a difference!”. Friends, I feel even when there is no effective treatment, screening for early diagnosis, followed by suitable care, can improve quality of life and life expectancy.

The most challenging problem of human civilization right now is that science is gathering knowledge faster than society is gathering the wisdom. Since the time of Hippocrates, the history of medicine has been one of ever more sophisticated phenotyping: these are the signs of diabetes – those, the symptoms of Alzheimer disease. Medicine’s ability to understand and treat disease has hinged on this careful phenotyping of patients. Modern genetics now has opportunity to compete the symmetry of this equation by bringing genotyping to the traditionally phenotypic endeavour of clinical medicine. And while the complexity of this information is a barrier to this implementation, medical genetics and genetic counsellors are well positioned to deal with this emerging volume of information, ensuring our relevance to medical practice.

The pharma researchers also bear the additional burden of safeguarding ethics and moral values surrounding the work done outside our country. From sequencing analysis to microassays, unprecedented amounts of medical information are being generated which will soon directly pertain to patient care. It is high time that Indian medical geneticists demonstrate to clinicians and policy makers that their activities are necessary to patient care and genetics must emerge as part of medicine’s mainstream. The specificities of rare diseases, limited number of patients and scarcity of expertise, single them out as a distinctive domain where international collaboration has high added value. Knowledge must be shared and resources combined as efficiently as possible to tackle rare diseases effectively as a whole. Historically, health authorities have not systematically considered rare diseases to be a public health issue and rare diseases have not been the focus of research programs due to a lack of data. Today, however, most developed nations have launched national plans on rare disease research and management and India is not far behind. With these words, I inauguarate National Conference on Raising the Awareness on Rare Diseases and wish all its members a fulfilling scientific career in tackling rare diseases and mitigating the human suffering.

May God Bless.

Dr. APJ Abdul Kalam




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I congratulate Indian Organization for Rare Diseases, for championing the cause of creating awareness among masses on rare diseases and its impact on health, economic and social fabrics, which has been plaguing India for a long time.  I welcome the opportunity to speak about Policies related to rare diseases, Orphan Drugs issues in India.

At the outset, I want to acknowledge that too many rare diseases patients (approximately 100 million) across India are suffering and they are yet to receive adequate healthcare. This causes difficulties and distress for patients and families. Dealing with the negative perception of people with genetic disorders which effect many children and vulnerable adults has to be a key objective for us. These issues needed to be addressed by us as Government and all such efforts and actions must be comprehensive and sustained. I will lend my voice for solving these problems and provide focus and momentum in dealing with the challenges presented by rare diseases.




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SUMMARY


A comprehensive effort over the last 15 years in creating awareness among masses, driving policy initiatives for betterment of RD patients and encouraging the Pharma Industry to invest in producing Orphan Drugs especially in a challenging environment called India where a major percentage of rare diseases patients live has led to a mass movement among all the stakeholders. It is just a beginning though.