About Us


Joti Jain was born in a suburb of Srinagar, a beautiful capital town of Kashmir in India. She is no stranger to serious life challenges. Joti grew up in neighbourhoods screaming of extremism without a safety net in the very real sense of the word. In broad daylight, there were kidnappings, shootings, rape cases, constant threats, and stone-pelting on a daily basis. Attending school and playing with friends were luxuries, her parents could not afford.

Her life had a twist when she had to flee from her house one night barefooted and without belongings to a town about 270km away. She was in a family of 8, where they lived in a small tent with different struggles and challenges. She had to find ways to motivate herself to live and survive because staying safe was a battle she had to face every day.


What Is This Initiative About?

This initiative is a team of professionals and caregivers whose aim is rare diseases and all that pertains to it. We have a vision, and that vision is to provide adequate information about rare diseases and the people that have been affected by them. 

We understand what children with these diseases go through and want to help them in our little way. We conduct proper research on these rare diseases and use this knowledge to transform the experiences of patients. We also provide support to the affected patients with similar experiences by creating a community where they can come together and share their feelings.

We aim to improve the lives of people with rare diseases by raising awareness, providing support, and clamouring for medicine development. With the use of biotechnology, we can use living cells and cell materials to research and produce drugs to treat and prevent diseases.

Biotechnology is a broad field of science that makes use of research tools from chemistry and biology to study and solve problems like a human disease. Biotechnology improves the odds for a large number of patients across the world with life-threatening conditions and rare diseases. It is used to develop vaccines and therapies that decrease the risks of infection.

Our Team

Our team is made up of healthcare professionals, biotechnologists, caregivers, counsellors, and psychologists who handle the affairs of the organization.

Rare Disease Initiative

Our Value

  • Empathy: We place the feelings of others first before ours. We are concerned about what affected persons, and their families go through, and this drives us into doing more.
  • Accountability: We are responsible for all the information we share and the resources we give. We are accountable to everyone that sponsors and supports us. We are not false or fake, which means we are highly trustworthy.
  • Passion: We have a passion for supporting people with rare diseases, as well as our families. This passion is the motivating factor that keeps us going tirelessly. We love what we do with all sincerity.

Rare Disease Initiative