A ZSer’s passion for rare disease advocacy

A rare disease is defined as one that affects less than 1 in 2,000 people. Over 300 million people are diagnosed with rare diseases, accounting for 3.5% to 5.9% of the global population. Seventy percent of these start in childhood; however, a lack of scientific knowledge often leads to delayed diagnosis. To raise awareness and support for those affected by rare diseases and their families, Rare Disease Day is now globally observed every year on Feb. 28 (or 29 in leap years)—the rarest day of the year. Furthermore, Rare Disease Day advocates for equalizing social opportunities, healthcare and access to diagnosis and treatments for people with rare diseases.

We recently sat down with Vaibhav Kumar, knowledge services manager at ZS’s New Delhi office with a passion for working in rare diseases. “Rare Disease Day holds a special place in my heart as it helps in giving a voice to the millions of people who are suffering without knowing much about their condition. Witnessing the struggles faced by individuals and families affected by rare diseases ignited a desire within me to contribute in any way I could. Working alongside like-minded people who are also driven to better patients’ lives has been a key driver,” Vaibhav shares.

Vaibhav joined ZS in 2014 as an associate and has been involved with rare diseases ever since. Over time, he came to understandd the dynamics of rare diseases and how they impact patients, caregivers and pharmaceutical companies. This awareness has helped him provide solutions to ZS’s clients in different aspects of commercialization and drug development for rare diseases. We asked what motivates his support for this community.

“Among ZS’s core values of treating people right, getting it right, and doing the right thing, the one which is closest to me is ‘Treating people right.’ No matter the situation, the people culture of ZS is always there to help and support you. This motivates me to keep concentrating and succeeding here,” says Vaibhav.

Vaibhav is dedicated to spreading awareness and proudly shares some of the recent activities conducted in ZS offices to observe Rare Disease Day. “This year, our team shared educational infographics with ZSers to spread awareness around the cause. We had also put up an art wall at our New Delhi office, where employees could express their encouragement and empathy for the rare disease community. We also illuminated the office in Rare Disease Day colors.”

For Vaibhav and many others, Rare Disease Day means more than just spreading awareness globally. It’s about creating hope, advancing research and helping those coping with the difficulties of having these diseases. Many of our ZSers work side-by-side with our clients to help develop and deliver therapies to combat rare diseases.

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