Ahmedabad to Witness a Special Run for Rare Disease Awareness

Newzdaddy Healthcare Updates

Synopsis of the Article

• The 4th edition of RaceFor7 will take place in Ahmedabad on February 23, 2025, at LJ University, S G Highway.
• The 10th edition of RaceFor7 will happen simultaneously in 21 cities across India, including Bengaluru.
• RaceFor7 is organized by the Organization for Rare Diseases India (ORDI) to raise awareness about rare diseases and promote access to treatment.
• The theme for this year is “For Rare, Everywhere”, emphasizing the need for better healthcare access for rare disease patients.
• The event will include discussions on the National Policy for Rare Diseases 2021 and the need for sustainable funding for treatment.
• Dr. Meenakshi Bhat, a clinical geneticist, highlighted that patients with treatable rare diseases are eligible for ₹50 lakh financial support under the policy.
• Prasanna Shirol, Co-founder of ORDI, stressed the urgent need for better policy implementation and state-level government involvement.
• Dr. Monica Puri, Chief Country Access & Policy Officer at Roche, expressed appreciation for RaceFor7 and emphasized the importance of inclusive healthcare.
• Rahul Kamath, COO of Roche, acknowledged ORDI’s role and reaffirmed Roche’s commitment to supporting the cause.
• RaceFor7 symbolizes 7,000 rare diseases, with 7,000+ participants running 7 km to spread awareness.
• The initiative started in 2016 in Bengaluru and has grown significantly, expecting over 10,000 participants in 2025.
• Invitations have been sent to Health Ministers and key stakeholders to push for policy improvements and stronger funding.

The 10th edition of RaceFor7, India’s largest rare disease awareness run, is scheduled for February 23, 2025, with simultaneous events in 21 cities. To support people with rare diseases, doctors, patients, carers, and healthcare advocates will come together for the fourth edition of the run in Ahmedabad at LJ University on S G Highway.

The Organisation for Rare Diseases India (ORDI) launched RaceFor7 intending to increase public awareness of the 7,000 recognised rare diseases. This yearly event represents the more than 7,000 participants who run 7 kilometres in support of patients with rare diseases and to promote improved access to healthcare. The event began in Bengaluru in 2016 and has now expanded to become a national movement.

“For Rare, Everywhere” is this year’s strong message for RaceFor7, highlighting the importance of not undervaluing rare diseases. Raising awareness, advocating for more robust policy implementation, and securing long-term treatment financing are the objectives.

In addition to being a running event, LJ University’s Ahmedabad run will provide a forum for conversations regarding the application of policies. Experts will discuss the difficulties Indian patients with rare diseases encounter, such as delayed diagnosis, insufficient financing, and restricted access to care.

To give eligible patients with treatable rare diseases financial support of up to ₹50 lakh, the National Policy for Rare Diseases (NPRD) 2021 was developed. Accessibility and awareness are still significant obstacles, though.

Leading clinical geneticist Dr Meenakshi Bhat of The Centre for Human Genetics in Bengaluru emphasised the significance of raising awareness of this policy. To guarantee better results for patients, she underlined the necessity of early diagnosis and ongoing treatment.

Co-founder of ORDI Prasanna Shirol emphasised the pressing need for more robust state-level policy implementation. He called on the government to create more rare disease Centres of Excellence (COEs), enhance patient support systems, and expedite funding approvals.

Since health is a state matter, we are calling on state governments to do more to enact laws that will help people with rare diseases. Effective therapy depends on long-term funding and expedited approvals, he said.

Roche, a global leader in healthcare, has increased its support for RaceFor7. Roche’s Chief Country Access & Policy Officer, Dr Monica Puri, also praised the initiative.

“Seeing an occasion like RaceFor7 bring Indians together for a problem that needs immediate attention is encouraging. To raise awareness and enhance patients’ access to healthcare for those with rare diseases, we must collaborate, she said.

Rahul Kamath, the COO of Roche, also commended ORDI for its work, saying, “We at Roche are honoured to be part of this movement, which is changing lives.” The future of rare disease care needs to be redesigned.

RaceFor7 began as a small project in 2016 and has since grown into a national movement. This year, more than 10,000 runners are anticipated to run in 21 cities, raising awareness of rare diseases overall.

The organisers of RaceFor7 have gathered important stakeholders and health ministers from many states to truly make a difference. The objective is to improve healthcare assistance for patients with rare diseases in India, foster policy conversations, and fortify partnerships.

Your involvement can assist in prioritising rare diseases, regardless of whether you are an advocate, supporter, or runner. RaceFor7 is a purpose to provide thousands of families with hope and change, not just an event.

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