Race for a rare cause – Race for Rare Diseases Awareness

Join Hands with ‘RaceFor7’ – ORDI organised Run for Rare Diseases in Ahmedabad on Feb 19

BILKULONLINE

Ahmedabad, Feb 16: Bollywood films besides entertainment, at times do help to drive awareness about sensitive issues related to people and the society. Black, Taare Zameen Par, Gajini, Paa, My Name Is Khan, Guzaarish, Karthik Calling Karthik and so on. The films hit on the conditions and situation of people who were stuck with some kind of rare disease.

To serve the same purpose of brining awareness the 8th edition of the 7km event for the rare disease community ‘Race For 7’ has been organised which commemorates the ‘World Rare Disease Day’ in Ahmedabad on February 19.

Jaya Srivastava , Executive Committee Member of ORDI and co-coordinator for the event elaborated her point “this annual event by the ORDI (Organisation for rare diseases India) is to advocate better policies and access to treatment for rare disease patients, Race For 7 is a seven kilometre walk/run/cycle symbolizing 7000 known rare diseases, the average of 7 years it takes to diagnose a rare disease and the 70 million estimated rare diseases patients in India. The event is open to the general public and will see participation from rare disease patients and their families too. Registration details are available at racefor7.com”.

“Besides Ahmedabad, the event is being held in 12 other cities nationally including Bangalore, Davangere, Mysuru, Mumbai, Kochi, Pune, Kolkata, New Delhi, Chennai, Hyderabad, Lucknow and Thiruvananthapuram” Jaya said.

The Ahmedabad event is being held on February 19th – Sunday at New LJ Campus, LJ University, Off S G Road, Makarba from 6.00 AM onwards. Over 500 + enthusiasts who support the cause of raising awareness on Rare diseases have registered for the Walkathon which would be flagged off by Harsh Sanghvi, the minister of State and Home in the presence of other key dignitaries. 

“We are thrilled to bring Race for 7 back to an in-person and on ground event after a virtual event the last two years due to the pandemic,” explained Prasanna Kumar Shirol, co-founder and Executive Director, ORDI through his visual message to the media.

“Racefor7 is one of the world’s largest multi-city events to raise mass awareness about Rare Disease. Racefor7 aims to create awareness and the need of preventive measures to contain Rare Diseases such as Consanguineous Marriages, Prenatal Tests, and Informed decision about child birth, New Born Screening, Precision Healthcare and Innovation etc.”

“Thanks to the Central Government, today we have a National Policy for Rare Diseases. This is just the beginning of recognition of Rare Diseases in India. We still need to address the many challenges that this patient community faces like complete care and support for all Rare Diseases, Local Drug Development, and Insurance Coverage etc. It’s time that all the state governments come forward and take the initiative to join hands with the central Government and extend support from their side. This calls for more support and we request all of you to come forward, participate to make this movement bigger by creating more awareness about the Rare Disease patients in India,” he added. 

Amit Mookim, Vice President and General Manager, South Asia IQVIA said, “We at IQVIA are fully committed to supporting the cause for rare diseases and the Race for 7 is a fantastic initiative to bring patient and their families, IQVIANs, our clients and communities to come together to build more awareness around rare diseases – much needs to be done and this initiative is part of our contribution to continue supporting patients and their families to create an impetus for continued research, support and awareness around the country.”

Dr. Chetan Trivedi, Academy of Pediatrics, Gujarat shared, “Rare diseases’ awareness is very important, not only for the general public but also for healthcare professionals, especially pediatricians”.

“As the name suggests these diseases are rare and hence it is difficult for pediatricians to diagnose in early stages of the disease. An early diagnosis & timely intervention will help to prevent morbidity & mortality of patients suffering from such rare diseases” added Dr Trivedi.

Dr. Dinesh and Asha Modi the parents of Jenil shared the struggle of Jenil who is a warrior fighting the rare disease. Amit Pallath, young man whose life changed upside down after he was diagnosed of the rare disease was another warrior who shared how he is living with this acceptance of the disease. He pleads the government authorities to truly facilitate handicapped and other people in reality and not restrict it only on papers. Every public place, educational medical and public place must have facilities for the walkers-bound entry. Amit also highlighted that it is extremely important to be diagnosed of the rare diseases in children as early as possible to avoid complications and a painful life ahead. Karan Vaidya a young warrior of rare disease was accompanied with his doting mother Manisha Vaidya.

Jenil’s dad and Karan’s Mom shared their children’s journey while they insisted that government should establish centers to counselling of such warriors and their dear ones. Centers should come up to treat and cure of possible therapies for such warriors.

The warriors’ relatives, doctors and ORDI office bearers lamented the fact that there was hardly any awareness in our country about the rare diseases which are around 7000. But, in India nearly half of them have not yet been documented.  

“Not only awareness but acceptance must prevail in the society, since the warriors and their dear ones are not wanting ‘sympathy’ but acceptance, then comes the next steps to how facilitate them with medicines amenities etc” commented Sushma Patil the genetic Counsellor. 

ORDI (www.ordindia.in) is a not for profit organization to represent the collective voice the rare disease community in India. The objective of ORDI is to be a strong, united voice for all rare diseases in India, reducing inequities and ensuring that persons with rare diseases have access to the same resources as the general community.