NiemannPick India

07/07/2026

‘Never heard of it’ - a hard hitting documentary for NiemannPick Disease Niemann-Pick UK

Never Heard of It follows the journey of the small rare disease cha...

01/07/2026

25/06/2026

For past few weeks NiemannPick India had the privilege of working closely with the Government of Andhra Pradesh. We are deeply grateful to be part of this collaborative journey. It was an honour to participate in the Multi-Stakeholder Consultation and share our experiences as a patient-led organization. At NiemannPick India, we remain committed to supporting families affected by Niemann-Pick disease in Andhra Pradesh.

14/06/2026

This is one of the most important topics for young couples, those planning to start a family, and families searching for marriage alliances. It is a must-read article and one that deserves to be widely shared.

My sincere thanks to the author for bringing attention to such an important and often overlooked subject. Conversations around premarital genetic screening are not always easy, but they are necessary. Knowledge is power, and informed decisions today can prevent immense challenges tomorrow.

As a parents who has walked the rare disease journey, we can say from personal experience that when life takes an unexpected turn, medicine and healthcare become your only hope. It is a path no family wishes to travel if it can be prevented. The emotional, physical, and financial impact on families can be profound.

Science has given us the tools to understand risks before they become realities. Prevention, wherever possible, is always better than cure.

I am sharing this purely for public awareness and education. It is not intended to spark debate or argument, but rather to encourage people to learn, think scientifically, and make informed choices for the future.

Please take a few minutes to read the article and share it with others. It may help a family make a life-changing decision.

Premarital Screening: Couples in Bengaluru are increasingly opting for genetic carrier tests before marriage or pregnancy, with doctors noting rising awareness of inherited disorders and counselling needs in fertility clinics across the city today

14/05/2026

We thank Dinesh Gundu Raoji Hon’ble
Minister for Health & Family welfare for giving hope to families like ours. Thank you for your commitment Sir 🙏

https://www.facebook.com/share/1B6trk1xgH/?mibextid=WC7FNe

13/05/2026

We were humbled by the opportunity to meet Hon’ble Health Minister Shri Dinesh Gundu Rao and the rare disease stakeholders of Karnataka today. We sincerely appreciate the support and efforts that the Karnataka Health Ministry has extended towards rare disease families across the state.

NiemannPick India presented during the stakeholder discussion convened by the Health Ministry on the need for a structured and sustainable rare disease framework for Karnataka.

The discussions focused on:
• Formation of a Karnataka Rare Disease Committee
• Working towards a dedicated Karnataka State Rare Disease Policy
• Creating sustainable support systems for continuity of treatment
• Strengthening awareness, prevention, and treatment access for rare disease families

For families living with rare diseases, these discussions are deeply meaningful. They represent hope for better access to diagnosis, treatment, care, and dignity for children and families navigating extremely challenging journeys.

At Niemann Pick India, we remain committed to working collaboratively with government, clinicians, industry, and all stakeholders to ensure that no child is left behind because of lack of awareness, treatment access, or support.

We thank the Department of Health and Family Welfare Services - Govt. of Karnataka and all stakeholders for listening to patient voices and for taking meaningful steps towards building a more inclusive and compassionate rare disease ecosystem in the state.

10/05/2026

To the world, she’s a mom. To her family, she is a lighthouse. ⚓✨
Being a mother in the rare disease community means wearing many hats at once—and wearing them with incredible grace. Today, we celebrate the Super Moms who handle it all:
• The Chief Medical Officer: Managing medications, appointments, and specialized care with precision.
• The Career Professional: Balancing professional ambitions with the round-the-clock needs of their family.
• The Heart of the Home: Keeping the kitchen running, the house warm, and being a supportive partner through every challenge.
• The Fierce Advocate: Giving up so much to ensure their children have the best life possible.
You are the guiding light that keeps the family steady in every storm. Your strength is rare, your love is unconditional, and your impact is immeasurable.
Wishing a very Happy Mother’s Day to all the extraordinary rare moms who make the world a brighter place! 💖

05/05/2026

At NiemannPick India Charitable Trust, our mission has always been clear — no rare disease patient should be left behind.

We are grateful for the opportunity to represent the patient voice in our recent meeting with Mr. Lokesh Nara, where meaningful and solution-oriented discussions took place.

What stood out was a leadership approach that made conversations simple, listened keenly, and ensured that every concern was understood with empathy and intent.

Project Punarnavi is a powerful example of what collaborative efforts can achieve — mobilizing ₹16 crore to support treatment for a child with Spinal Muscular Atrophy. It reinforces a shared vision that every child deserves access to treatment.

We sincerely thank the Directorate of Medical Education (DME) and the Health Secretary, Government of Andhra Pradesh, for enabling this dialogue and for giving patient groups a seat at the table.

As a patient advocacy organization, we remain committed to:
• Amplifying patient voices
• Enabling access to treatment
• Supporting policy and systemic change

Together, for Rare