Get-hooked July 13, 2019
#RareDiseases – Organisation for Rare Diseases in India is out to change perceptions
Around 70 million people in India are affected by rare diseases. Rare diseases are medical conditions that affect a smaller percentage of the population. There are around 7,000 known rare diseases, although it is believed that they could be higher.
Coping with any medical condition can be hard but when its rare disorder, the battle gets that much harder as there is little awareness, even among the experts.
Patients in India with such rare diseases and their families have multiple stories that highlight their individual struggles. It can be quite lonely as there is little support from critical quarters, be it pharmas who are reluctant to spend time and money on research into rare diseases or the government that is unaware. It is here that the Organization for Rare Diseases in India (ORDIndia) plays a crucial role, by shining a ray of hope. Over the years, it is changing perceptions, one step at a time.
The ORDI was formed by parents of children with rare diseases who decided to come together and make a difference rather than wait for the government or other stakeholders to act. It offers support in the form of information, guidance and acts as a collective voice for these families. It also reaches out to parents abroad.
Prasanna Kumar B Shirol, Co-founder and Executive Director of ORDI India believes that for a larger cohesive action across India, the Centre must first look at rare diseases in a focused manner.
“The government is taking too long to bring relief to patients of rare diseases in India. In the meantime we are working at various levels to bring together patients of rare diseases and create awareness about the issues faced by them. The society needs to understand the challenges faced by people who are affected by these diseases. It is not just the patients, but also their families that struggle with them,” says Shirol.
Members of ORDI work with local setups to spread awareness and to ensure that patients get support. Patients need help in detection and diagnoses of their conditions, something the ORDI tries to provide. Sangeeta Barde feels for things to change, empathy is important and this is lacking.
I feel that people with rare diseases need the compassion of society. The lack of understanding and empathy makes life more challenging. We are trying to bring about the change at the grassroots level to bring people together, since the fight against rare diseases needs greater numbers and unity among stakeholders. We want people to know they are not alone in their struggle with rare diseases. It may take time but we will hopefully bring about a change in society and make it inclusive for everyone. – Sangeeta Barde, Co-founder/Director, Organisation for Rare Diseases in India
For starters an attitude change in government would make a big difference. While the Government of India has been instructed by the Supreme Court to speed up the implementation of the National Policy for Treatment of Rare Diseases, work is moving at a disappointing speed. Few states have created committees to look into the needs of patients of rare diseases as well.
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