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Registration Form World Rare Diseases Day - 2018 Conduct by Indian Organization for Rare Diseases
Please find a brief of a non-profit Organization I am part of working towards betterment of Rare Diseases Patients in India. After going through the brief, there is a Google Form which I request you all to fill in your capacity as either doctors, patients, parents, pharma companies, diagnostic companies, volunteers who can enroll, contribute and participate in the rare diseases day event (and beyond) which is being conducted as 'World Rare Diseases Day - 2018 in Vigyan Bhavan, New Delhi on 28-02-2018.
Hon’ble Vice President of India Shri M. Venkaiah Naidu has consented to inaugurate the day long program and would address the gathering with his key-note. It would follow with expert speakers from India and abroad sharing their learnings, current issues of RD community and challenges & opportunities. The program shall culminate with focused panel discussions.
WHAT IS A RARE DISEASE?
As the term describes, conditions that cause disease and are rare in a population, are rare diseases. In India, we are yet to define and list rare diseases; we borrow the definitions from other parts of the world. As an illustration, Japan discloses — 1 in 2500; Europe 1 in 2000 etc. Usually, it is under 0.01% of general population. There are 7000 known rare diseases as on date. Over the years the combined global rare diseases population is estimated to be 7-8% or approximately translates between 49-56 crores. With this definition, India has approximately 10 crores rare disease patients or represents 1/4th of world rare diseases population!
A BRIEF ON RARE DISEASES IN INDIA: In India, we face several challenges with respect to:
Defining, what rare diseases are for our population
Estimating the number or prevalence of these conditions
Listing the rare diseases
Availability of infrastructure
Access to correct and timely diagnosis
Specific expertise among professionals and health care providers
Availability and access to specific medications/ products to manage the medical condition / problem
The burden that the families, the community and the nation faces in supporting these afflicted children in terms of economics, lives not productive, lives neglected, lives compromised cannot even be estimated as of now. In reality, we know that there are millions, who suffer. They also suffer silently since they do not know where and how to reach for help.
Indian Organization for Rare Diseases (IORD) is the coming together of a group of like-minded individuals working for a common cause under an umbrella organization. We wish to strengthen the lone and tired voices of the many patients, their families and expert patient organizations entrenched in their struggle for survival.
IORD was created as not-for-profit, serving for the last 13 years in this ecosystem. The mission of IORD, among many others, is to raise the awareness through
Strategic association with a spectrum of organizations working in healthcare sector in India including NGOs towards raising awareness on rare diseases at the bottom of pyramid.
Advocate public policy in regular consultation with various states and central govt, their various ministries towards building a national policy on rare diseases in India.
Enable medical practitioners for them to effectively identify, address rare disease patient issues
Engage pharmaceutical companies to develop orphan drugs.
During these years, our effort is bring all the stakeholders on a common platform to recognize each other's needs and wants. A seamless integration of this ecosystem is our primary scope of work. We wish to associate with your esteemed organization to reach out to masses and create awareness of 'rare diseases' among them. Do let us know to whom we should reach out to in your management team for a comprehensive discussion and explore synergies, a way forward.
Kindly fill in the following form and share among your mailing lists to build registries of this ecosystem at the earliest.
Venue: Vigynan Bhavan, New Delhi on 28-02-2018 from 9.00 am to 5.00 pm
Attendees First Name
Attendees Last Name
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