Voices for Race Against Rare Diseases Now Draws Attention in India

The Organization for Rare Diseases India (ORDI), a patient centered non-profit organization today announced Race for 7, a unique first of its kind event being held to commemorate Rare Disease Day and draw attention to the needs of rare disease patients in India. The 7km run to be flagged off on 28^th February 2016 at St. Joseph’s Indian High School will target 7000 people to symbolically represent 7000 documented rare diseases matching strides and expressing solidarity with patients.

The primary objective behind Race for 7 is to raise awareness about rare diseases and the needs and challenges of rare diseases patients in keeping with the global theme of Rare Disease Day which is Patient Voice. There are an estimated 70 million Indians or 1 out of 20 Indian who suffer from rare diseases. Almost half of these are children, most of who do not live to see adulthood due to lack of appropriate medical intervention. The scenario worsens due to lack of early diagnosis along with expensive treatment options which pose major hurdles in rare disease management. Race for 7 will raise funds to help ORDI in its mission to improve the health of patients with rare diseases across India through awareness, advocacy, collaborations and information dissemination.

Prasanna Kumar B Shirol, Founder Director, ORDI and the father of a young teenager with a rare disease said, “It is ironic that while the number of patients with rare diseases is increasing every year, there is no treatment for more than 90% of the diseases and patients can, at best, depend only on supportive therapy. Awareness, accessibility and affordability are key needs of patients suffering from rare disease. The Rare Disease Day 2016 theme ‘Patient Voice’ recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and careers. We hope Race for 7 will bring the patient’s voice to the fore.”

Speaking on the occasion Dr. Meenakshi Bhatt, Consultant Clinical Genetics - CHG (Centre for Human Genetics) said, “A rare disease is often referred to as an ‘orphan disease’, since the condition is not likely to be researched or studied, therefore making treatment of the condition much more difficult. We have 22,000 genes in our system out of which 4600 are known to be associated with rare diseases and the list keeps on growing. With limited or no access to proper diagnosis, medical treatment or cure, mortality rate among patients suffering from rare diseases is high.”

“We must remember that rare disease is no longer a ‘rare’ occurrence. Globally, 350 million people are living with a rare disease,” said Dr. Vikas Sharma, Chief Medical Officer, India & Senior Director, Medical Ethics & Research, Quintiles who are key sponsors for Race for 7. “The lack of available treatments leaves patients and their families searching for new options and new hope. We therefore need more investment in rare disease research to develop better and more affordable treatment for patients and help them live qualitatively better lives.”

Rare disease patients who spoke at the media event highlighted the challenges they faced in living with a rare disease. Patients living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation was the unanimous sentiment expressed by the patients who appealed for support in creating awareness about Race for 7 and urging the people of Bengaluru to come together for this noble cause and  register for this unique race. It’s a roar against rare.