Skip to main content
  • Accessibility
  • Headlines
  • Coronavirus-News
  • Get-Hooked
  • Technology
  • Education
  • Employment
  • Parasports
  • Ask Bhavna
  • NHBrandView
  • Independent Living
  • Lifestyle
  • NH Videos
×
Newz Hook – Changing Attitudes towards Disability Logo
  • Stories
  • Videos
  • Inclusive
  • NH Voice
  • Login
COVID-19 Notification by Government in Accessible Format

Accessibility Tools

Text Size:

Contrast Scheme:

  • C
  • C

Reset

  • Home
  • Get-hooked
  • #RareDiseases – Organisation for Rare Diseases in India is out to change perceptions

#RareDiseases – Organisation for Rare Diseases in India is out to change perceptions

Get-hooked July 13, 2019
  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on WhatsApp (Opens in new window)

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.

Get in touch:

For more information about rare diseases, visit ORDI website: https://ordindia.org/.Email to contactus@ordindia.org. CALL: +91 8892 555 000

Support us to make NewzHook Sustainable – Make a Contribution Today

We need your continued support to enable us work towards Changing Attitudes towards Disability. Help us in our attempt to share the voices of people with disabilities that enable them to participate in the society on an equal footing!

Contribute to Newz Hook

NH Videos

Healing pain through art - Dr. Anubha Mahajan, Founder Chronic Pain India

Contribue to Newz Hook |Disability news. Support us to make NewzHook Sustainable – Make a Contribution Today.

Newsletter

 Subscribe to our Newsletter

Want to feature disability stories or share disability news with the disabled community? Write to:

editor@newzhook.com

Newz Hook - Accessible News

Download App Now!

Videos

View More

Get-hooked

Understanding Phantom Limb Pain

Parasports

India at Paralympics 2021 – Meet the disabled women athletes looking to make the country proud

Parasports

“Government apathy towards para sports demotivates us” - MyTake by Ebin Joseph

Get-hooked

Braille Blues Daddy, legendary blind guitarist & singer is no more

Newz Hook Logo

About Newz Hook

Newz Hook | Disability News - media site focusing on Disability Stories and Changing Attitudes towards Disability globally. We highlight disability news, offer inclusive solutions and create accessible collaborations. Our focus is to have Inclusion Champions from across the globe who will share disability stories and news.
Lets come together to change attitudes towards disability!

Newz Hook is reader-supported. When you buy through links on our site, we may earn an affiliate commission.

Follow us on:

Related Links

  • About Us
  • Contact Us
  • Privacy Policy
  • Partner with Newz Hook
  • Embed Newz Hook Timeline
  • Affiliate disclosure
  • Accessibility Statement
  • Contribute to Newz Hook

Our Awards

Zero Project Award Winner 2018
Back To Top
© 2019 All Right Reserved. Inclusive News India Private Limited.

Ask Bhavna

All fields are mandatory unless specified as optional.