MERD India Foundation: Monthly Newsletter – February 2026
Theme: Turning Grief into Action, and Awareness into Hope
This February, we walked, ran, and advocated across India to ensure that no family fighting a rare disease feels alone. From the corridors of AIIMS to the streets of Bengaluru and Jaipur, our mission remains clear: Early Diagnosis, Universal Screening, and Equitable Care.
Highlights of the Month
The Grand Finale: Rare Disease Day (Feb 28)
In a heart-warming collaboration with Lions Club Jaipur Adarsh Nagar and Parivaar Charitable Trust (Tunga, Bassi), we celebrated the unique spirit of intellectually disabled children.
The Magic of Joy: Through soulful music and a captivating magic show, we went beyond advocacy to spark real happiness.
Our Reward: The radiant smiles of these children reminded us that while these diseases are rare, our collective compassion must be limitless.
Jaipur Advocacy: Purple Fair & Awareness Walk (Feb 27)
We painted the pink city purple!
Participated in the Purple Fair at MG Hospital, Jaipur.
Joined the Rare Disease Walk and Seminar at Central Park and JK Lon Hospital. These events, organized by the Rare Diseases Foundation, were vital in bringing clinical insights to the public eye.
National Footprint: Bengaluru & Delhi (Feb 21–22)
Race for Rare (Bengaluru): We joined hundreds in the ORDI awareness run. It was an honor to stand alongside Karnataka Health Minister, Dinesh Gundu Rao, and the brave patient community.
AIIMS Workshop (New Delhi): Represented the IEM community at the "Rare Disease Awareness: From Diagnosis to Care" workshop. Alongside experts and fellow advocates from RET Foundation, LSDSS, and the Rare Diseases Foundation, we pushed for better implementation of the National Policy for Rare Diseases (NPRD).
Education & Community Outreach (Jan 30 – Feb 4)
Preventative Strategies: Attended an essential ORDI webinar with Dr. Shagun Aggarwal, focusing on the critical role of genetic counseling.
Healthy Children, Healthy Nation: Distributed woolen garments and stationery to 70 children at Shyam Baba Valmiki Basti, Jaipur. Their spirited rendition of "Hum Honge Kaamyab" remains our inspiration.
Support for Inborn Errors of Metabolism (IEM)
This month, we provided informative support to 40 individuals and families navigating IEM and Rare Diseases. We continue to emphasize that Universal Newborn Screening is not just a medical necessity—it is a fundamental right to life.
A Father’s Promise: MedBound Times Feature
Our founder’s journey—from losing three sons to Pyruvate Carboxylase Deficiency to building a national movement—is featured this month on MedBound Times.
"This is not professional work. It is personal. We must move from imported dependency to Indian drug development. Rare disease care is an emergency." — Vikas Bhatia
Read the Full Story Here
Together, we are "More Than You Can Imagine."https://www.medboundtimes.com/medicine/rare-disease-day-2026-a-fathers-promise-that-became-indias-rare-disease-movement#google_vignette