Today is Rare Disease Day

I have atypical Hemolytic Uremic Syndrome (aHUS). In the US, there are only about 300 people who have this disease. Most of them are children. Adult aHUS is even more rare. I am not aware of any statistics in India. Fifteen years after I was first diagnosed, I am still waiting for a cure. Eculizumab, a very promising drug has shown very good results with this disease. I will need to get access to this drug (currently not available in India) and then undergo a kidney transplant to be able to have a good chance of a life without dialysis.

Atypical HUS is what is officially called a 'rare disease'. Today, February 29th is Rare Disease Day, a day that comes rarely! Worldwide, people affected by one of the many rare diseases are commemorating the day and doing various things to improve awareness among the general population about rare diseases. There is a lot of work happening in the US and Europe in terms of lobbying with governments to improve support to find cures for rare diseases. The incentive for pharmaceutical companies is not generally high to work on cures for rare diseases because the potential customers are well, rare! So, it is important that the governments do something proactively to improve the chances for cures to be found and then be taken to the people suffering from these diseases.

I have created this small video and uploaded it to the Rare Diseases Day website and the Atypical HUS You Tube channel along with may others around the world to commemorate this day.

This is the Official Rare Disease Day video: