The expertise of a medical doctor always plays a pivotal role in managing a rare medical condition. Lack of this expert pool is causing an irreparable loss to a rare disease patient, thereby increasing the mental agony of their parents.
This is primarily because a Rare Disease (RD) patient typically sees an average of 7.3 different physicians before he/she gets a proper diagnosis done.
The wrong diagnosis in the first physician visit is at 40%, while the average time it takes from a symptom to a proper diagnosis stands at 4.8 years as per an Orphanet Survey in EU.
If this is the case in a developed and a mature healthcare environment, one can imagine the situation in a country like India, which is much worse, to say the least.
End of the day, 6-8% of the population ie., 8-10 crores of the population at any given point are known to suffer from one of the 7000 - 8000 rare diseases and need urgent attention. Of them, 80% of the conditions are genetic and 30% mortality is recorded in the first year of birth, which is very significant. This will go as high till 50% before the babies reach the age of 5 years.
With a vast spread of doctors/clinicians/researchers working across primary health care centres, government area hospitals, government referral hospitals, private corporate hospitals and private clinics throughout rural and urban India, there is a need for seamless integration.
For proper treatment facilitation, the identification of a rare disease patient and subsequent referral to the 'Center of Excellence' on Rare Disease Patient Management at a nodal point would lead to quick turnaround if 'Symptom to Diagnosis' is quick. Result: There would be lesser mortality and subsequently improve the quality of life for these RD patients.
Hence, IORD seeks your expert voluntary services to make a positive difference in the lives of Rare Disease Patients and it begins with your contribution as a first step.
For any further information, please write to:
Indian Organization for Rare Diseases
5th Floor, Vasant Towers, Lane Beside Shoppers Stop
Opp: Max vision, Secunderabad, Telangana 500016
http://www.rarediseases.in/Ph: 096664 38880
Email:
info@rarediseases.in,
indiaord@gmail.com