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Rare Disease Day And Importance Of Rare Disease Day

By FnF Correspondent | PUBLISHED: 26, Feb 2021, 10:28 am IST | UPDATED: 26, Feb 2021, 10:46 am IST

Rare Disease Day And Importance Of Rare Disease Day

WHAT?

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Why?

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some poinRare Disease Day in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

WHO?

Rare Disease Day events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organisations who group together several rare disease organisations in a given country or region. Click on a logo of one of the National Alliances to go to their website.

WHERE?

The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 100 countries all over the world in 2020. We hope even more will join in 2021.

Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

WHEN?

The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.

On rarediseaseday.org you can find information about the thousands of events happening around the world on the last day of February. If you are planning an event, register your event details on the Post your Event page to get your event listed on the site!

Rare Disease Day in India

In India, patient organisations first became involved in Rare Disease Day in 2010. Since then, they've focused on raising awareness and compassion for people living with a rare disease all across India through poster campaigns, school visits, competitions, a film festival, counselling sessions, and more. In 2012, the day attracted mass media attention when Indian star singer Shaan performed at an event.

India marked the occasion of Rare Disease Day 2020 with events across the country including India’s annual ‘Race for 7’ event. More than 7000 participants ran a 7km race to represent the more than 7000 rare diseases documented so far. The Indian Organisation for Rare Diseases also hosted a meeting bringing together all stakeholders, creating a platform to brainstorm and analyse the latest rare disease policy released by the Indian health ministry.

ORGANIZATION FOR RARE DISEASES INDIA

The Organization for Rare Diseases India (ORDI) is a national umbrella organization which represents millions of men, women and children that are affected with rare diseases in India;a section 25 non-profit company in India. ORDI’s overarching goal is to raise awareness on rare disorders which in turn will emphasize the need to articulate early diagnosis, treatment, support and better national policy encompassing rare disorders.

Rare disease in India affect more people than the name suggests, in fact 1 out of 20 Indians. The scenario worsens due to lack of early diagnosis along with expensive treatment options, which pose major hurdles in rare disease management.

ORDI was founded with the intention of bringing together the powerful and collective voices of experts in genetics, molecular diagnostics, patient advocacy and other stakeholders.

With the goal of representing the collective voice of all patients with rare diseases in India, ORDI reached out to disease-specific patients advocacy groups (PAGs) inviting them to join hands with ORDI.

Race for 7 is a nationwide Awareness Campaign organized by ORDI in lieu of World Rare Diseases Day, February 29th.

ORDI’s primary vision is for India to have a Holistic Rare diseases policy. Owing to persistent efforts, a national policy on rare disease patients was drafted on 13th January 2020. The collective movement initiated by ORDI with its perseverance has been successful in persuading the government leading to many novel initiatives like “the definition for Orphan drug”, Inclusion of Rare Diseases in Rashtriya Aroghya Nidhi Scheme, Patient registry initiative by ICMR etc.

ORDI is a member with several international non-profit organization focused on rare disease like Global Gene, NORD, EURORDIS, RDI, IRDIRC etc