Wednesday, August 5, 2015

Announcing India's first Atypical HUS Registry!



Atypical Hemolytic Uremic Syndrome is an ultra-rare disease affecting a small number of patients world-wide. This devastating disease affects children and adults and without proper management and treatment by experts can lead to kidney failure and in some cases, even death.

Very little data exists about this disease in India. No published data about the incidence and prevalence of this disease is available. It is very important for some database to be available because without this, it is difficult to make a case for pharmaceutical companies, healthcare providers and importantly, the government to take any decisions regarding this disease.

This is my primary disease, the disease that caused my kidneys to fail. I founded The Atypical HUS India Foundation a few months back which is now a registered Trust. Through this foundation, I have started a registry for Atypical HUS Indian patients.

I am requesting patients and family members to please spare a few minutes and fill out the registry form so that we can make a small beginning in collecting some data about this disease in India.

The link to the registry form is here.

Please share this with anyone you know who is afflicted with this disease or has a family member or friend who has this disease and request them to fill out the form. No personal data would be shared with anyone. The data will only be used for analysis. Thanks!

1 comment:

Nisha said...

My god....sorry. ..words fail me...I got it...spoke too soon