Rare Disease Patients Left in the Dark Without Official Data

 ORDI’s Flagship Run “Racefor7” returns to Ahmedabad to Raise Awareness on Rare Diseases 

BILKULONLINE

By Rafat Quadri 

Ahmedabad, February 23: The Organization for Rare Diseases India (ORDI) is set to host its annual flagship event, “Racefor7” across 15 cities in India on February 25. The primary objective of the 7 kilometers marathon is to raise awareness on rare diseases and provide patients and their families with access to national and international resources, empowering them in the process.

Racefor7 is an annual awareness run organized in alignment with World Rare Diseases Day. Since its inception in 2016 in Bengaluru, the event has expanded nationwide, with an expected participation of over 20,000 individuals this year scheduled on February 25 across the cities of Bengaluru, Mumbai, Delhi, Hyderabad, Kolkata, Ahmedabad, Chennai, Kochi, Pune, Mysuru, Davangere, Hubballi, Asansol, Kozhikode, and Coimbatore in line with the theme ONE NATION, ONE DAY – TOGETHER FOR RARE.

The Ahmedabad run will commence from LJ University grounds, Makarba, Ahmedabad. The run will be flagged off by IPS ACP Neeraj Badgujarand and it will commence at 7 am. Interested participants can register by visiting the Racefor7 website.

“I am honoured to support the cause of Rare Diseases and participate in Racefor7. One Nation One Day – Together for Rare, join me in this multi-city marathon on Sunday, February 25, starting at 7:00 am onwards across India. Every step we take brings us closer to raising awareness and finding solutions for our patients with Rare Diseases,” said IPS ACP Neeraj Badgujarand in his speech.

• Organization for Rare Diseases India (ORDI) to host “Racefor7” marathon across 15 cities  to spread awareness about rare diseases in India on Feb 25 

Jaya Shrivastava, Gujarat Coordinator, commented, “Race for 7 stands as the sole mass awareness initiative in India for the past 8 years. This event has played a pivotal role, both directly and indirectly, in the comprehensive development of the Rare Disease ecosystem in India. By capturing the attention of policymakers, stakeholders, and the global community, Race for 7 has positioned India on the global map in the field of Rare Diseases. This year’s Theme is ONE NATION, ONE DAY- TOGETHER FOR RARE emphasizes an amplified movement for all the stakeholders across the country, uniting for the support of rare disease patients. The focus is on enhancing access to therapies under policy guidelines, establishing an ecosystem for long-term care and support, fostering research and development, and ultimately creating a collective moment of ‘I care for Rare..”

“We are proud to continue our longstanding partnership with ORDI as the main sponsor of the Racefor7 marathon for the past eight years. This event reflects our commitment to supporting rare disease communities and raising awareness about their unique challenges. We look forward to another successful marathon and the opportunity to make a meaningful difference together.” said Jinu Jose, Vice President, Research & Development Solutions, India.

The fee for regular runners is INR 699, while students can register at a discounted rate of INR 399. Rare disease patients and individuals with different abilities, along with two caregivers each, can participate free of charge. Participants in this category will receive a kit containing a T-shirt, a medal, an e-certificate, and complimentary breakfast.

The Organization for Rare Diseases India (ORDI) is a non-profit organization that focuses on advocating for the needs of individuals and families affected by rare diseases in India. ORDI works to raise awareness about rare diseases, improve access to treatment and care, and support research initiatives. They also collaborate with various stakeholders, including healthcare professionals, policymakers, and industry partners, to address the challenges faced by the rare disease community in India.

Speaking to BILKULONLINE, Jaya said “It’s a significant challenge faced by families and patients of rare diseases in many countries, including India. The lack of official data on rare diseases can lead to several issues, including difficulties in diagnosis, limited access to appropriate treatment and care, and a lack of awareness among healthcare professionals and the general public”.

So what are your recommendations and suggestion to the government, Jaya replied “WE humbly submit the view that there should be an official data that should be available for everyone so that those who are wanting to undertake research, help out the patients and family members to lead a less miserable life with such diseases and bring a new ray of hope and dignity in life work can be done systematically. We also wish that government takes initiative to intervene and set up new guidelines and orders the insurance companies to not discard or reject such patients before or after they are struck with such diseases. Also, there should be more counseling centres must be set up at every possible area of the country with the help of NGOs etc so that many of such patients are cured in the early stages of the disease or even completely come out of it.”

Few patients with their family members were present at LJ College to interact with the media. A book titled ‘IM Possible’ written by 13 year old Keya Hatkar from Mumbai was released on this occasion. It is published by BriBooks.

It should be noted that organizations like the Organization for Rare Diseases India (ORDI) play a crucial role in addressing these challenges by advocating for better policies, raising awareness, and supporting research efforts. However, official data collection and recognition of rare diseases by government health agencies are essential to ensure that the needs of these patients are properly addressed.

 

 

(Rafat Quadri can be contacted at editorbilkul@gmail.com)