The 4th edition of the 7km/ 14 km event for the rare disease community will be held in Kolkata on March 5 th Press conference to launch the event is on 28 th February
Kolkata ,28 th February , 2023: To commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) is holding the 8th edition of RaceFor7® on Sunday March 5th in Kolkata .
Rare diseases are those which have an incidence of less than 1 in 2500. WHO had stated that the chance of non communicable disorders is more than communicable disorders. Though each disorder can be rare collectively a large number of people are affected. Approximately 1 in 20 people are affected. About 80 % of these diseases are genetic .
To launch this event a press conference was held on 28 th February. Shri Manoj Tiwari , Mr. Anupam Roy, Ms. Nushrat Jahan and Ms. Priyadarshini Bawa would be attending the press conference.
An annual event by ORDI to raise awareness for the rare disease community and advocate better policies and access to treatment for rare disease patients, Race For 7 is a seven kilometer 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 Bengaluru, the event is being held in 13 other cities nationally including Davangere, Mysuru, Ahmedabad, Mumbai, Kochi, Pune, Kolkata, New Delhi, Chennai, Hyderabad, Lucknow and Thiruvananthapuram.
“We are thrilled to bring Race for 7 back to an in-person event after a virtual event the last two years because of 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 childbirth, 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.”
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. Dipanjana Datta , Genetic Counselor and state co-ordinator for ORDI , discussed the 2021 National Policy for Rare Diseases (NPRD). The Central Government announced a one-time financial support of up to Rs 50 lakhs per individual with a rare condition under this scheme for treatment-eligible individuals.
We thank the government for helping us with the Centre of excellence where patients are registering. Though the waiting time is more for uploading the documents in the crowd funding portal, we are hopeful that patient would ultimately get the respite they need. We are also thankful to the state government for helping the patient with rare disease being operated under Swastho Sathi initiative and for providing support for free prophylactic factors / growth hormone for specific rare disease conditions . We need more social sensitization at school workplaces and insurance policies to support the numerous hospitalizations and medicines for this community.
Speaking about support needed for the community, Mrs. Moumita Ghosh , Co-founder , Cure SMA Foundation of India, commented “Early detection, early interventions and early access to available treatment can change the course of many rare disease. Awareness can play an important role in that direction.”. Mrs Shikha Mehtramani , Founder, Indian Prader Willi Syndrome Association, emphasized the need for Inclusive education options,experienced and affordable therapy options which would be easier to access for parents. She added awareness on diseases like PWS which is associated with insatiable hunger, is low ,leading to poor surveillance and high mortality. Mr Dilip Singh , father of a child who is diagnosed with Duchenne Muscular Dystrophy, said “Aerodynamically the bumblebee shouldn’t be able to fly, but the bumblebee doesn’t know that so it goes on flying anyway. Let’s not tell our specially abled and rare disease warriors what they can’t but open to them the world of possibilities. I look forward to a world where our kids feel that they belong as much as everyone else.” Young mother Suchismita , who has a son diagnosed it Alagille Syndrome highlighted the need of policies/insurances to cater to the need of long term management of the patients who need repeated hospitalization.
Race for7 is a step towards building awareness for rare diseases as also raising funds to meet the needs of the rare disease community. Globally, Rare Disease Day is observed every year on the last day of February Month. It plays a critical part in building an international rare disease community that is multi-disease, global, and diverse but united in purpose. Though Rare Disease Day is patient-led, everyone including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention. Racefor7® is one such event in India.
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.