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
  • Know more about the Race For 7 to mark International Rare Disease Day

Know more about the Race For 7 to mark International Rare Disease Day

Get-hooked February 21, 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)
0

28 February is observed as International Rare Disease Day a day dedicated to create awareness and support for those who have rare diseases.

The very first Rare Disease Day was observed on 29 February 2008 by a few European nations and in Canada.
Since then more countries have started observing the day and around 80 nations participated in 2018.

In India, the Organisation for Rare Diseases India (ORDI) is working on creating awareness and raising funds about the challenges faced by people who have rare diseases. This year the theme is‘ Bridging health and social care’.

What Are Rare Diseases

According to the World Health Organization (WHO) a rare disease should be defined as one which has a frequency of less than 6.5-10 per 10,000 people. The definition may vary as per the population of a country. There are around 7000 rare diseases that have been reported or documented in various parts of the world.

Most of the rare diseases have no treatment available at present, while some that can be treated are very expensive especially for developing countries like India.

In case of India, ORDI suggests that rare disease is one that affects 1 in 5,000 people or less. It is estimated that around 70 million people are affected by a rare disease in India.

One in every 20 Indians suffers from a rare disease. almost half of whom are children, an important fact that often doesn’t get highlighted. Besides lack of access to early intervention and treatment because of the lack of widespread awareness about rare diseases, the cost of treatment where available is often prohibitively expensive. We urgently need national and state policies that address the unique requirements of the rare disease community and enable them to lead lives of dignity and self-worth. – .Prasanna Shirol, Founder-Director, ORDI

ORDI organises annual marathon events to mark the International Rare Disease Day. The Run for 7 symbolizes the importance of number 7 in regards to rare diseases.

The known 7,000 rare diseases with 7,000 people running for a distance of 7 kilometers. Seven is also the average number of years that takes for a rare disease to be diagnosed.

“My association with rare diseases is because of rare genetic disorder PWS ‘Prader-Willi Syndrome’ of my son. Even people above the poverty line cannot afford the treatment, the cost of growth hormones or equipment required in rare disorder and diseases. In fact many of the rare disorders like PWS does not have a treatment available. We are making our effort to have policies and facilities like other countries to take care of our children. These children and families also have their fundamental rights as others. Racefor7 is the right platform to create the awareness and to motivate the rare disease and rare disorder patients, families, care givers, well-wishers and the government”, says Anil Choubey, Trustee & co-founder, Indian Prader-Willi Syndrome Association

This year marathons are being held all across the country in 10 cities and at different dates in February.

The 10 cities are Bengaluru, Mysuru, Chennai, Kolkata, Mumbai, Jaipur, Coimbatore, Hyderabad, New Delhi, Ahmedabad, Thiruvananthapuram and Kochi.

For more information about Race For 7 Click Here.

0

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

Read more on Newz Hook

  • Technology
    Automotive accessibility product Caruna helps people with disabilities move in & out of cars easily
  • Accessibility,Independent Living
    Affordable and Independent Mobility for Persons with Disabilities in India – Challenges & Way Forward (series 2 of 3)
  • Accessibility,Independent Living
    Affordable and Independent Mobility for Persons with Disabilities in India – Challenges & Way Forward (series 1 of 3)
  • Education,Employment
    A STEPPING STONE TO COVETED CAREERS

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

Newsletter

 Subscribe to our Newsletter

Want to feature your inspiring story or share an event with the disabled community? Write to:

editor@newzhook.com

Related News

Kush Kanodia carrying the torch at the 2020 London Paralympics

Get-hooked

“UK needs a National Disability Strategy, co-produced with disabled people” – Disability rights champion Kush Kanodia

Image of a Caruna swivel seat on the passenger seat of a car

Technology

Automotive accessibility product Caruna helps people with disabilities move in & out of cars easily

Accessibility

Affordable and Independent Mobility for Persons with Disabilities in India – Challenges & Way Forward (series 1 of 3)

Accessibility

Affordable and Independent Mobility for Persons with Disabilities in India – Challenges & Way Forward (series 2 of 3)

Newz Hook - Accessible News

Download App Now!

Videos

View More

Get-hooked

Understanding Stress of Moving House for Child with Autism

Get-hooked

Deafblind student Asha Patwal’s powerful message wins top award at UN World Data Forum contest

Get-hooked

#ChampionswithCP - Every barrier is a reason to strive harder for Dr Riitesh Sinha, innovator with cerebral palsy

Accessibility

A mothers contribution towards the cause of Down syndrome

Newz Hook Logo

About Newz Hook

Newz Hook is a media site focusing on Changing Attitudes towards Disability globally. We highlight stories that share insights into the lives of people with disabilities, offer solutions and create collaborations. Our focus is to have Inclusion Champions from across the globe who share knowledge about disability, inclusion & accessibility.

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.