Rare Disease Day
Rare Disease Day
Rare Disease Day is an annual observance held on the last day of February (February 28th, or February 29th in a Leap Year) to raise awareness of rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.
आज दुर्लभ रोग का प्रतीक दिवस है, आओ मिलकर शपथ उठाएं, इन रोगों की जागरूकता फैलाएं, जन जन तक अपनी बात पहुंचाएं, कई चेहरों पर मुस्कुराहट बिखराएं, कश्ती रहती है हमेशा भंवर में, आओ मिलकर किनारे पहुंचाएं"
Rare Disease Day Celebrations in India
February 28, 2010: Rare Disease Day was celebrated for the first time in India at Sir Gangaram Hospital in New Delhi.
February 28, 2011: The 2nd Rare Disease Day was held at Kamaraj Memorial Hall, Chennai.
February 29, 2012: The 3rd Rare Disease Day was held at Nehru Science Centre, Mumbai.
February 28, 2013: The 4th Rare Disease Day was held at Maulana Azad Medical College, New Delhi.
February 28, 2014: The 5th Rare Disease Day was celebrated in multiple cities across India, including Bangalore, New Delhi, Mumbai, Chennai, Jaipur, Kolkata, Calicut, Kasaragod, and Hyderabad.
February 28, 2015: The 6th Rare Diseases Day was celebrated in Jaipur, Delhi, Bangalore, Mannankadu, Hyderabad, and Chennai.
February 28, 2016: The 7th Rare Diseases Day was celebrated in Jaipur, Delhi, Bangalore, Calicut, Guntur, and Chennai.
Source: http://www.rarediseaseday.org/events/world & http://www.lsdss.org/
February 27, 2017: The 8th Rare Diseases Day was celebrated at Hotel Lords Plaza in Jaipur, where 12 parents from Jaipur shared their views.
February 25, 2018: The 9th World Rare Disease Day was observed with a unique symbolic "Race for 7," a mass awareness run/walk, at Shivaji Park, Vijay Path, Tilak Nagar, Jaipur, Rajasthan. Over 80 people attended and participated in the run/walk to raise awareness.
2019 - 10th Rare Disease Day:
February 28: MERDINDIA, with the support of the Lion Club Jaipur, organized a unique symbolic "Race for 7," a mass awareness run/walk, at Jawahar Circle Garden, Jaipur, Rajasthan. Over 70 people attended and participated.
March 3: MERDINDIA, in collaboration with IAP Bikaner, Lion Club Adarsh Nagar Jaipur, Lion Clubs Bikaner, and IEM Support Charitable Trusts, organized a unique symbolic mass awareness march for rare diseases from Bhraman Path, Sadul Ganj Rd, Shardul Colony, Bikaner. Over 125 people participated.
Rare Disease Day Events - 2020 to 2025
2020: MERDINDIA participated in and supported a Rare Disease Day event organized by the Department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGIMS), held on February 29 at the Telemedicine hall, SGPGIMS.
2021: On Rare Disease Day, the MERDINDIA Foundation visited the Seth Anandi Lal Poddar Institute of Deaf & Dumb, a special education school in Jaipur, Rajasthan. They provided bed sheets, drawing boxes, lentils, sugar, fruits, and biscuits for 60 children.
2022:
February 27: We observed Rare Diseases Day at the Umeed Special Children School in Jaipur, with kind support from the Lion Club Jaipur Adarsh Nagar. More than 40 people, along with children, attended the program. We provided several items to the needy children. It was a very good program for us.
2023:
February 28, New Delhi: We participated in the Rare Disease Day celebration organized by the Directorate General of Health Services (Dte.GHS), Ministry of Health and Family Welfare (MoHFW), in collaboration with the Centre for Health Education, Bureau (CHEB), All India Institute of Medical Sciences (AIIMS), and Maulana Azad Medical College (MAMC), New Delhi.
February 26, Asansol: A Rare Disease Day awareness seminar was organized along with the IEM Support Charitable Trust, Reborn, and IAP Asansol at the Odyssey Club. Key speakers were Dr. Anil Jalan and Dr. Deppanjna Datta. More than 50 people attended the seminar.
We also participated in the "Race for Rare Diseases Awareness" organized by ORDI and Reborn at the Odyssey Club Grounds.
February 19, Kochi: We participated in ORDI's "Race for 7," an awareness run for rare diseases in India. A few hundred people, including children and some patients, attended the run.
2024:
March 3, Jaipur: A unique symbolic Rare Disease Awareness Posters gallery was organized at the Kalaneri Art Gallery, Jawahar Lal Nehru Marg. The gallery displayed 100 posters about rare diseases, and over 115 people visited the awareness gallery. This event received wonderful support from the Organization for Rare Diseases India (ORDI) and many other parent advocacy groups from India.
February 28, Jaipur: Rare Diseases Day was observed at Nirmal Vivek Special Children School with a magic show. Over 100 special needs children, including the school management, enjoyed the show. Eight members and three children also participated.
February 25, Kozhikode: We participated in the "Race for Rare Diseases Awareness" at Kozhikode beach, Freedom Square, organized by ORDI. Over 100 people attended the run. 🏃♂️
2025:
February 28, Jaipur:
We participated in and supported a Rare Disease Day celebration with the Rare Diseases Foundation and JK Lon Hospital with a walk for rare diseases at the Rajasthan International Centre.
A Rare Disease Day celebration was organized at the Approach Autism Society with a magic and music program. It was an excellent way to observe Rare Diseases Day, with great support from MERDINDIA Foundation members Ujjwal, Piyush, Shipra, Veer, Mohit, and Chavi, and from the Approach Autism Society, Anurag and Garima.
February 23, Chandigarh: We participated in the "Race for Rare Diseases Awareness" in Chandigarh, organized by ORDI, from PGIMER to Sukhna Lake. Around 90 people attended the event. The event received excellent support from Deepti Choudhary, Dr. Inusha Panigrahi and her team members. The Chief Guests were Dean Prof. R.K. Ratho of PGIMER and Dr. Bhavneet Bharti.
