What Persons With Rare Diseases And Their Families Want

There are more than 7000 rare diseases. Most of them are genetic disorders and affect children from a young age. Diagnosis takes very long. Treatments are very expensive and often don't even exist. There is no proper rare disease policy in place. 

Rare is Many, Rare is Strong, Rare is Proud

#RareDiseaseDay #RareDisease #CareForRare 

These diseases affect not just the lives of children but also their families. Listen to voices of patients with rare disease and their families to understand better.

Read more about them by clicking on their names

Aarav Sharma, Spinal Muscular Atrophy

Nishka Hosangady, Benign Hereditary Chorea

Rajiv Chandrabhanu, Haemophiliia 

Vikrant Bhatkar whose son Aarya succumbed to Niemann-Pick Disease at age 7

Manjit Singh, Honorary President LSDSS who lost his sons and siblings to MPS II Hunter Syndrome