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Be An IORD Volunteer

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Be An IORD Volunteer

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 i.e., 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 Rare Disease 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.

We invite experts – be it a medical expert, researcher, a counsellor or a volunteer – to lend a helping hand to IORD.

The core focus for an IORD volunteer would remain in the following areas – Pro bono:

Rare Disease Patient Identification
Doctors / Medical Expert / Researcher Lending their Expertise
Associate Specialty Diagnostic Labs to run high end Genetic Tests at a cost
Bringing On board Specialty Tertiary Care Hospitals & Rare Disease Patient Management
Facilitate Logistics, Equipment, Support to Rare Disease Patients
Fund Raising for Rare Disease Patients
Educational Intervention for young Rare Disease Patients
Information Technology Expert Services to IORD
To be a “Lead Voice / Representative” in your City for Rare Diseases as part of IORD’s “One City At A Time” Program
To be a Nodal Point for Rare Disease Patients in your City

Those interested can partner with us by filling up this volunteer registration form.

Be An IORD Volunteer

Be An IORD Volunteer

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