NiemannPick India

15/09/2026

Clinician capacity building workshop on NiemannPick and Lysosomal Storage Disorder at Andhra Pradesh. Initiated by Directorate of Medical Education in collab with NiemannPick India, L*DSS supported by Sanofi
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15/09/2026

🧬 Strengthening Rare Disease Care in Andhra Pradesh

Directorate of Medical Education, Andhra Pradesh in collaboration with NiemannPick India and L*DSS with the support of Sanofi, brought together clinicians in Vijayawada for a Clinician Capacity Building Program on Niemann–Pick Disease & Lysosomal Storage Disorders.

🔍 Recognize early. Diagnose sooner. Refer appropriately. Care better.

Experts speakers Dr. Priyanshu Mathur Dr.Radha Ramadevi Dr. Milan Choksey shared excellent insights into Lysosomal Storage Disease (L*D) red flags, helping clinicians recognise the early signs and strengthen timely diagnosis and referral.

Together, building stronger clinical pathways for rare diseases in Andhra Pradesh. 💙

04/09/2026

Rare Diseases Clinician Capacity Building

The Department of Medical Education, Andhra Pradesh, in collaboration with L*DSS, Niemann-Pick India, and Sanofi, is conducting Series 1 of the Rare Diseases Clinician Capacity Building Series.

📚 Focus:
Early Detection and Holistic Management of Niemann-Pick Disease and Other Lysosomal Storage Disorders (L*Ds)

This capacity-building programme aims to strengthen clinicians’ ability to recognise red flags, enable early diagnosis, understand appropriate referral pathways, and support holistic management of patients with rare diseases.

📅 5 September 2026 | Saturday
📍 Siddhartha Medical College, Vijayawada, Andhra Pradesh

Together, we can build a stronger clinical ecosystem for rare diseases in Andhra Pradesh—where early recognition leads to timely diagnosis, better care and improved outcomes.

🤝 Building clinical capacity. Strengthening care pathways. Changing lives.



Sanofi India Lysosomal Storage Disorders Support Society - L*DSS - 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