District programme · RD-T1 / RD-T2 v0.1 (draft)

Rare disease
is not rare
in a district

Most children with a rare disease in India are found late, after years of visits that went nowhere. This programme puts ten plain questions into the routine RBSK visit, so the child who needs a genetics opinion is recognised at the first contact and carries a slip to the next tier.

10 red-flag clusters

4 critical — any one refers

Choose your language · भाषा चुनो · भाषा चुणो

English, Hindi or Marwari — for patients and health workers alike. Your choice is remembered on this device.

The chain of care

Tier 1

Frontline screening

ASHA · ANM · Anganwadi · teacher · RBSK team

Ten spoken questions during a routine RBSK visit. Output is a priority band and a slip the family carries — never a diagnosis.

Tier 2

Clinical validation

Medical officer · paediatrician at the DEIC

Examination, anthropometry and first-line workup. The suggested route is advisory; the clinician's decision is recorded with a reason.

Tier 3

Confirmation

Centre of Excellence genetics team

Genetic counselling, confirmatory testing and policy-group classification. Diagnosis rests here, and only here.

Start here

Why a checklist, not a test

No laboratory test can be run on every child in a block. A short, spoken checklist can. Its job is to raise the pre-test probability enough that a scarce genetics appointment is spent on the right child.

Why the slip matters most

Between the visit and the DEIC there is no network, no register and no phone call — only a piece of paper in a family's hands. The printed slip is the actual product of this programme.

Draft status. The ten clusters, the fourteen Tier 2 findings, the critical markings and both routing thresholds are a v0.1 draft awaiting sign-off from the Centre of Excellence genetics team. Six open clinical questions are listed on the FAQ page. Until sign-off, a priority band is a reason to look properly — nothing more.