Welcome parents!
First time being a parent? Need a helping hand when you’re grappling with the reality of possible genetic defects in your children? We are here to bring you the facts!
Unveiling the Shadows: The Silent Epidemic of Rare Diseases in India
The World Health Organization (WHO) defines rare diseases as those affecting 1 or fewer than 1 in every 1,000 people. However, definitions vary across countries, in India we do not have a standard criteria for categorizing these diseases. The Indian Council of Medical Research (ICMR) defines rare diseases as those affecting fewer than one person in a population of 2,500, while the Organization for Rare Diseases India (ORDI) suggests a ratio of 1 in 5,000. These conditions encompass a wide spectrum, including genetic disorders, infectious tropical diseases, rare cancers, and degenerative conditions.
Understanding the Challenges of Rare Disease Patients
What is it like to live with a disease that baffles most doctors?
Baby in the NICU? Don’t panic!
Having a newborn in the ICU can be a scary experience. While the doctors are busy caring for your child, allow us to bring you clarity about what’s going on.
Common Rare Diseases
The diagnosis is the most nerve wrecking part of the disease. Inform yourself of the warning signs to make things easier!
Get your newborn screened asap!
Rare diseases are not as rare as you think! Thankfully we have a new technology that can help detect them before it’s too late…
