The race for rare diseases must go on

World Rare Disease Day on February 28

Across the world, the last day of February is commemorated as World Rare Disease Day to raise awareness of the impact that rare diseases have on the lives of patients and those who care for them. It is a day that brings together patients, families, caregivers, medical professionals,policymakers and members of the public in solidarity.

“We recently organized Race for 7 in Bangalore, Mumbai and Washington (with smaller events in Jaipur and South Carolina) to increase awareness about rare diseases in India. While the event was a great success with participation of over 5000 people across cities and countries, the effort to amplify the voice of the rare disease community must continue and the race must go on,” said Prasanna Shirol, co-founder of the Organization for Rare Diseases India (ORDI), an NGO committed to addressing the challenges faced by those living with rare diseases.

“With an estimated 70 million rare disease patients in India, the incidence of rare diseases is far more common that most people believe,” said Sangeeta Barde, co-founder, ORDI. “Race for 7 is our way of sensitizing more people about the impact of rare diseases on patients. It’s our ode to rare disease patients who lead their life with immense resilience and an indomitable spirit.”

“While the global theme for Rare Disease Day is Research and we recognize the importance of research to address the many challenges of rare disease patients, it is also important that we use this day in India to draw attention to policies for rare diseases,” said Prasanna Shirol. “There is now a national policy for rare diseases that have been announced by the central government. It is very important that state governments follow suit and put in place State policies on priority so that the benefits can be passed onto patients.”

ORDI was founded to address the many challenges in the management of rare disease in India. It aims to address the unmet needs of rare disease patients and serves as an umbrella organization for rare disease patients and other stakeholders throughout the country. The funds raised from Race for 7 will be utilized to help ORDI in its mission to improve the health of patients with rare diseases across the country through awareness, advocacy, collaborations and information dissemination.

IMPORTANT FACTS ABOUT RARE DISEASE

• There are around 7000 known rare diseases globally
• There are an estimated 350+ million rare disease patients worldwide, 70 million of whom are in India
• 1 in every 20 Indians is estimated to have a rare disease
• About 80% of rare diseases are genetic in origin
• About 50% of rare diseases affect children
• Many of them die before their fifth birthday due to lack of diagnosis and treatment
• It takes on an average five to seven years to diagnose a rare disease in developed countries and even longer in countries like India
• Only around 500 orphan drugs exist in the market for rare diseases
• Majority of rare diseases have no treatment, and when they do exist, are extremely expensive and unaffordable
• The suggested threshold in India for a disease to be defined as rare is 1 in 10,000

Source: Organisation for Rare Diseases India (ORDI)

About Organization of Rare Diseases India (ORDI):

Founded in Feb 2014, ORDI is a patient-centered non-profit organization with the mission to improve the health of patients with rare diseases across India through awareness, advocacy, collaborations and information dissemination. ORDI represents the collective voice of all patients with rare diseases in India to affect government policymaking. ORDI has identified and taken on the grand challenges facing the rare diseases community in India and is committed to systematically and holistically addressing those challenges.

For more information, please visit www.ordindia.org