- The charity event will be held at New LJ Campus, LJ University, Off S G Road, Makarba from 6.00 am onwards.
- All participants will receive a t-shirt bearing the name of one rare disease to help spread awareness, finisher medals and e-certificates.
- Over 500 + enthusiasts who support the cause of raising awareness on Rare diseases have registered for the Walkathon which would be flagged off by Minister of State and Home Harsh Sanghvi and other key dignitaries.
- Gujarat’s only lab for genetics, Genexplore Diagnostics & Research Centre, is now in Shyamal Cross Roads
NE HEALTH BUREU
AHMEDABAD, FEB 16
The Organization for Rare Diseases India (ORDI) on Wednesday announced the eighth edition of Racefor7, a 7km event being held on Sunday, February 19 to raise awareness for the rare disease community in India. Racefor7 symbolically represents the 7,000 known rare diseases, the estimated 70 million rare disease patients in India and the average of 7 years it takes to diagnose a rare disease.
There are 8k rare diseases but the first-of-its-kind India's Mission Mode Approach to Screen 7 Crore Tribals in 200 Districts & eliminate Sickle Cell Disease by 2047 could be a game-changer 👏👏https://t.co/Z8goK03S0O#rarediseases #sicklecelldisease@MoHFW_INDIA @PMOIndia pic.twitter.com/6P0FNhiQqK
— Rare Diseases IORD (@rarediseases_in) February 7, 2023
Participants can run, walk or run or even cycle 7 kilometers wherever they are located to lend their support for rare diseases. Race for 7 is held every year in February to commemorate Rare Disease Day which falls on the last day of the month.
Delhi High Court directs Centre to release Rs 5.35 crore to fund clinical trials for DMD to Hanugen Therapeutics Private Limited.
Read the fully story: https://t.co/Lltu4EhtBj#DMD #DuchenneMuscularDystrophy #MuscularDystrophy #RareDisease pic.twitter.com/JabGJPabHq
— Rare Diseases IORD (@rarediseases_in) December 27, 2022
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 – our base office, Davangere, Mysuru, Mumbai, Kochi, Pune, Kolkata, New Delhi, Chennai, Hyderabad, Lucknow and Thiruvananthapuram.
Rajya Sabha MP Fauzia Khan has raised concerns over the benefits of the National Rare Disease Policy reaching the rare disease patients. She told Parliament that there was “unending delay and lack of urgency” on the part of Centres of Excellence #RareDisease pic.twitter.com/5sLdLE4H2X
— Rare Diseases IORD (@rarediseases_in) December 13, 2022
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 Minister of State and Home Harsh Sanghvi and other key dignitaries.
All participants will receive a t-shirt bearing the name of one rare disease to help spread awareness, finisher medals and e-certificates.
With Timely Diagnosis Through Genetic Testing, Cerebrotendinous xanthomatosis (CTX), a rare lipid storage disease in a young bogy gets treated successfully in Hyderabad, reports @the_hindu in this article dated 18 Nov-22. #RareDisease #ctx #Cerebrotendinousxanthomatosis pic.twitter.com/CXC6aJTrym
— Rare Diseases IORD (@rarediseases_in) November 18, 2022
“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,” said Prasanna Kumar Shirol, co-founder and Executive Director, ORDI.
“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,” Shirol added.
“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,” Sushma Patil, Genetic Counsellor said.
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.”
“I congratulate ORDI and Prasanna Shirol for putting tireless days and hours for this community of rare diseases affected families. Not only social recognition but fighting for their justice of equality and improving quality of life is a commendable initiative . I am also aware that our government is also thinking positively to help such needy patients. I wish ORDI best of luck for this walkathon and wish that they will create more support and awareness among the society for building a healthy nation.” said Dr Rakesh Joshi, (Medical superintendent – Civil Hospital)
Lauding the ORDI, Dr. Chetan G Trivedi, Academy of Paediatrics, Gujarat said, “Rare diseases’ awareness is very important, not only for the general public but also for healthcare professionals, especially paediatricians! As the name suggests these diseases are rare and hence it is difficult for paediatricians 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. Timely intervention will help to improve the quality of life of such patients. We at the Academy of Paediatrics Gujarat, an association of 2,300 paediatricians of Gujarat state wholeheartedly support this endeavour of public awareness initiative – Race for 7 organized by ORDI.”
ORDI Gujarat Coordinator Jaya Srivastava said, “The organisation has so far helped 372 patients with rare diseases to get treatment at a cost of Rs 274 crore. The minimum cost of treatment is Rs 50 lakh.”
Manishaben Vaidya, mother of Karan, said, “My son was afflicted with a rare disease related to muscles when he was 6 years old but it was detected only after 9 years. Thanks to the ORDI, he is almost become normal but dependent on us to carry out his routine activities. The government has many policies for such kind of differently able people but lacks implementation. We urge all stakeholders to set up differently-able friendly infrastructure in all educational institutions, hospitals and shops for their easy accessibility.”
Gujarat’s only lab for genetics is now in Shyamal X Roads
Dr Shiva Shankaran Chettiyar, Molecular Genticist has set up Genexplore Diagnostics & Research Centre, Gujarat’s only lab for genetics testing in Shyamal Cross Road, Ahmedabad. He is the visiting faculty of many United States of America-based varsities as well the National Forensic University in Ahmedabad.
He has been working in tandem with the Health Ministry in this regard.
He can be contacted over 079-26584044/55 and 09586022557. Email: scheti@genexplore.co.in. Do visit: www.genexplore.co.in
