Healthcare - Rare Disease

“ It is rare to find a business partner who is selfless. If you are lucky it happens once in a lifetime. ”.
- Anonymous.     

Rare diseases are disease where patients are few.

Often debilitating lifelong disease or disorder condition with a prevalence of 1 or less, per 1000 population is defined by the World Health Organization (WHO) as a rare disease.

Rare and ultra rare diseases are sometimes referred to as orphan and ultra orphan diseases, respectively.

7.2 crore Indians are suffering from Rare diseases as per the report of "foundation of research on rare disease and disorder".

Our goal is to make the unknown - known.

Rare disease even after years are not still well understood nor attended.

Hence in India, it is a matter of having proper forums, support groups, initiatives and action happening to address this problem.

These are areas where profitability is an issue-sometimes due to volumes; sometimes due to subject complexity; due to limited experience and knowledge of doctors; sometimes not having enough information about access of to patients and support groups.

The paradox of our country is that we have a large patients to population ratio and we are the cheapest and most efficient producers of medicines, but still we do not cater to these segments, as we should be doing.

Hence the responsibilities is of no one. Technically, globally and in our country, it is the Governments responsibility. But, here we hardly manage to take care for emergency and urgency medicines.

Rare Disease are the last priority or they never come up to the point of maturity.

Pharmaceutical companies only look to make huge profits selling commodities, products like pain killers and paracetamol, which are produced and consumed in large quantities. Hence, why take the pain of challenging subjects like rare and neglected diseases?

We at Swati Spentose, are pioneering solutions for Rare Diseases (mucopolysaccharidosis – bone inflammation leading to dwarfism) that plague India today.