The Institute of Child Health (ICH), Kolkata, hosted a thought-provoking panel discussion on “Awareness and Access for Patients with Rare Kidney Diseases”, bringing together leading nephrologists, geneticists, policymakers, patient advocates, fertility specialists, and industry partners.
The session emphasized early diagnosis, multidisciplinary management, and lifelong access to care for patients living with rare kidney disorders — both children and adults.
The discussion was moderated by Dr. Dipanjana Datta, Genetic Counselor and State Coordinator, ORDI.
Highlights and Key Messages
Dr. Rajiv Sinha, Senior Pediatric Nephrologist and HOD, Dept. of Nephrology , Institute of Child Health
The greatest challenge in pediatric nephrology is delay — delay in recognition, diagnosis, and referral., P
At ICH, we see children who could have been managed early if genetic testing and awareness were available at the primary level.
Early detection and precision-based management can save kidneys — and lives.”
Dr. Sinha highlighted that early recognition of conditions like nephronophthisis, cystinosis, or FSGS variants through genetic tools not only improves survival but also empowers families to plan their future with confidence. He underscored ICH’s commitment to bridging pediatric and adult nephrology for smooth transition care.
Dr. Pratik Das, Adult Nephrologist
“As children with genetic kidney disorders grow into adulthood, we must ensure continuity of care.
Adult nephrology must focus not just on dialysis and transplant, but also on awareness, fertility planning, and psychological support. In addition , there should be awarenes s to test and follow up other adults or young adults in the family
Transition clinics between pediatric and adult renal units are the next step.”
Dr. Kaushik Mondal, Clinical Geneticist & HOD, SGPGI
“Genetic diagnosis has transformed how we define rare kidney diseases.
With the cost of exome sequencing and NGS panels decreasing, India must create sustainable genomic testing pathways — through national programs, CSR, and insurance inclusion.”
Dr. Rajeev Agarwal, Fertility Consultant, Renew Healthcare
“For couples affected by hereditary kidney disorders, recurrence prevention through preconception counseling, preimplantation genetic testing (PGT-M), and prenatal diagnosis must become standard of care.
Genetics and fertility need to work hand in hand to give families informed choices.”
Dr. Suchandra Mukhopadhyay, Nodal Officer, Centre of Excellence (CoE), IPGMER
“The CoE at IPGMER is actively implementing NRDP guidelines and coordinating with state health authorities to create funding pathways for Group 1 disorders.
Our goal is to ensure that patients with rare kidney diseases can access testing, treatment, and transplant support services through NPRD funding.”
Sri. Abhisek Chakraborty, Father of Adidev, CKD Survivor
We are grateful for an early diagnosis thanks to genetic test that was prescribed. Unfortunately this was not suggested to our son’s grad parent
Genetic testing finally gave us an answer — and hope.
No family should have to go through that uncertainty again.
Sri Partha Roy, National Director, Child Help Foundation
“We need to move rare kidney diseases from hospitals into public discourse — through school awareness, local screening, and CSR-supported patient programs.
Access begins with awareness.”
Sri Aniruddha Roy Choudhury, Celebrity Advocate for Rare Disease Awareness
“We talk about heart disease and cancer openly — it’s time rare kidney diseases get the same attention.
Awareness drives empathy, and empathy drives funding and policy change.”
Dr. Anuj Pandey, Representative, Premas Life Sciences
“Industry has a role beyond technology — to democratize genomics.
Collaborative sequencing programs and shared data platforms can bring genetic testing within reach for every child and adult who needs it.”
Moderator Remarks
Dr. Priyankar Pal, HOD, Institute of Child Health
“ICH is proud to lead this dialogue on rare kidney diseases in Eastern India.
Our mission is to integrate clinical care, genetic access, and patient advocacy under one roof.
Early intervention in childhood leads to better outcomes in adulthood — this is the cycle we aim to complete.”
Dr. Dipanjana Datta, Genetic Counselor, & State Coordinator for WB and NE , ORDI,
“Awareness, access, and early genetic diagnosis are not luxuries — they are necessities.
With collaboration between CoEs, clinicians, NGOs, and the genomic industry, we can make rare disease care equitable and effective.”
Conclusion
The panel concluded with a unified call to action —
For children: early recognition, genetic diagnosis, and multidisciplinary management.
For adults: long-term monitoring, fertility counseling, and sustained awareness.
For India: strengthening CoE networks, NRDP implementation, and public-private partnerships to make genomic testing accessible to all.
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