Mumbai runs to support rare disease patients

Racefor7, an initiative championed by the Organization for Rare Diseases India (ORDI), was recently organised in Mumbai to raise awareness for the rare disease community. The-first-of-its-kind event for rare diseases in the world, represented 7,000 rare diseases with 7,000 people running for seven kilometers to represent the average number of years it takes to diagnose a rare disease.

“Rare genetic diseases surprisingly aren’t so rare after all. We have a long way to go in terms of advocacy, awareness and medical research in this field. Millions of rare disease patients need your support,” said renowned singer Shaan, who flagged off the event.

Although an estimated one in 20 Indians suffer from a rare disease, lack of awareness and information has created several challenges for patients and their caregivers, most importantly delayed diagnosis, affordable and targetted care and treatment and access. Besides members of the general public, several rare disease patients and their families participated in Racefor7 to draw attention to the challenges faced by rare disease patients, especially children, and the urgency for governments and other institutions to recognise their unique needs and create enabling policies and a more supportive environment for them.

Racefor7 is held in the month of February to commemorate World Rare Disease Day which falls on the last day of February. The theme for Rare Disease Day 2020 was ‘Reframe Rare for Rare Disease Day’ with the message that ‘rare is many, rare is strong and rare is proud!’. The campaign message reframes perceptions of what it means to be ‘rare’ so that no one is left behind in achieving greater equity. Racefor7, that started off as an awareness walk in Bengaluru to commemorate World Rare Disease Day in February 2016, has now grown into a significant campaign.

On the occasion, Sangeeta Barde, Co-Founder Director, ORDI said, “We need society to understand that millions of rare disease patients face inequitable access to diagnosis, treatment and care. We collectively must re-double our efforts to show that rare isn’t scarce, rare isn’t infrequent, rare isn’t remote. In fact, there are more than 300 million rare disease patients in the world out of which 70 million could be living in India, each supported by family, friends and a team of carers, 300 million would make up the third largest country in the world. While the rare disease community joins together across borders and diseases to raise awareness and advocate for equity, Show your support for the rare disease community with pride!”

Rare diseases is a key therapeutic focus for IQVIA that has provided clinical services for more than 258 rare disease studies in 87 countries worldwide since 2011.

Amit Mookim, Managing Director, IQVIA – South Asia, said, “IQVIA is delighted to be associated for the fifth consecutive year as the main sponsor of Racefor7. Racefor7 is a unique way of engaging the community with those who matter the most –patients and their caregivers – for a common cause. It is imperative that the society and government understand and address the needs of these rare disease patients. We hope that the public will come forward in large numbers to participate in Racefor7 and help amplify the voice of the rare disease community.”

“Rare diseases have been neglected and it is unfortunate that our patients with treatable rare disorders do not have access to drugs. Children’s liver foundation whole heartedly supports ORDI in its relentless efforts to make treatment for rare diseases accessible to all patients with these disorders,” said Dr Aabha Nagral, Liver specialist at Apollo and Jaslok Hospitals and founding trustee of Children’s Liver Foundation.

Prasanna Shirol added the importance of having a rare disease policy and an orphan drug policy for holistic management of rare diseases for patients in the absence of any healthcare policy  /insurance coverage and to support the industry to develop newer drugs and research respectively.

Besides Racefor7, ORDI also launched the first Rare Disease Helpline in India (+91 8892 555 000), Rare Disease Care Co-Ordination Centers (RDCCC), the first Center of Excellence for Rare Diseases (COERD) in India at Bengaluru, the first exclusive Day Care Centre for Rare Diseases in India at Bengaluru, the campaign for a National Rare Disease Policy, the first NMD (Neuromuscular Clinic) in India for rare disease patients and India’s first assisted living facility for Rare Disease patients in Bengaluru, to name a few.