Rare Disease and LSD Awareness Days
Awareness days bring patients, families, doctors and the public together to speak up for people living with rare diseases. These are the days LSDSS marks every year, and how you can take part.
Next dates
Rare Disease Day
Last day of February
International Pompe Day
15 April
International MPS Awareness Day
15 May
International Gaucher Day
1 October
The days we mark
Each day is a chance to share accurate information, tell families’ stories and ask for better diagnosis, treatment and care.
Last day of February · next: end of February
Rare Disease Day
A worldwide day of awareness for the millions of people living with a rare disease, held on the last day of February. LSDSS has marked it since India’s first Rare Disease Day in 2010, with events in cities across the country, often with Centres of Excellence. In 2023, LSDSS took part in the first Rare Disease Day held by the Ministry of Health and Family Welfare.
15 April · next: 15 April
International Pompe Day
Raises awareness of Pompe disease, a condition in which glycogen builds up in the muscles. Early diagnosis matters, especially for babies with the infantile-onset form. In 2022, LSDSS marked the day with a webinar for doctors on Pompe disease and its management.
15 May · next: 15 May
International MPS Awareness Day
Raises awareness of mucopolysaccharidosis (MPS), a group of inherited conditions affecting the bones, joints, organs and, in some types, the brain. LSDSS has held MPS Awareness Day events in New Delhi with families and doctors.
1 October · next: 1 October
International Gaucher Day
Raises awareness of Gaucher disease, in which a fatty substance builds up in the spleen, liver and bones. Effective treatment is available, so early diagnosis matters. LSDSS has marked Gaucher awareness with events in New Delhi, Chennai and, in October 2025, at AIIMS Bhopal.
Get involved
How you can take part
You do not need to be an expert to help. A share or a conversation can lead a family to a diagnosis.
- Share our disease pages and posts with your friends, family and WhatsApp groups
- Tell your story, or a family member’s, if you are comfortable doing so
- Hospitals, colleges and companies: hold an awareness session with LSDSS
- Doctors: talk to colleagues about the early signs of LSDs
- Volunteer with LSDSS, or support our work with a donation
Hold an awareness event with LSDSS
Hospitals, Centres of Excellence, colleges and companies can work with us on Rare Disease Day and other awareness days. Volunteers are always welcome.