Abstract
Rare diseases (RD) are conditions that affect a small number of people and hence do not get the focus on government health priorities in a resource-constrained setting such as India. Therefore, it is essential to focus on strengthening and utilizing the existing public health framework for the optimal usage of healthcare resources. In this regard, National Health Mission (NHM) is one of the crucial programs initiated by the government of India to address the health needs of the under-served. As Phase 1 of the NHM moves towards completion, we explored the Reproductive, Maternal, Newborn, Child, and Adolescent Health (RMNCH + A) program under NHM to assess their potential and limitations to aid RD care. We found that some of the disease-prevention initiatives of NHM address certain RDs and can easily be expanded to manage many such preventable RDs. In addition, NHM programs can provide a unique epidemiological data repository to strengthen the National Rare Disease Registry. These programs can also play important role in providing a continuum of care for many RDs that need lifelong management. However, existing programs have a limited scope to provide specialized RD-related treatments, which is better served in a more focused system. Thus, considering RDs in the design of the existing programs may help RD management better through prevention, data collection, and providing a continuum of care.
Highlights
Rare diseases (RD) are a heterogeneous group of distinct and often debilitating diseases characterized by low prevalence in a population
In the absence of epidemiological data, National Policy for Rare Diseases (NPRD) 2021 identifies three groups of disorders as RDs based on their treatment: It is, important to reiterate that the National Health Mission (NHM) programs, in their current forms, have limited potential to provide treatment and management to RD patients
Here, we explored the existing National Health Mission’s RMNCH + A programs from the lens of RD management strategies
Summary
Rare diseases (RD) are a heterogeneous group of distinct and often debilitating diseases characterized by low prevalence in a population. ASHAs can refer a sick child to health facilities for management of complications While these programs are primarily designed to focus on common childhood diseases, they could be important for babies born with birth defects and RDs. For instance, each district hospital and sub-district hospital has been mandated to have Special Newborn Care Units (SNCU) to provide critical care for sick newborns. In the absence of epidemiological data, NPRD 2021 identifies three groups of disorders as RDs based on their treatment: It is, important to reiterate that the NHM programs, in their current forms, have limited potential to provide treatment and management to RD patients. These data are stored and managed in different NHM-databases such as Maternal Death Surveillance and Response (MDSR)— to record instances of maternal deaths and causes; National Reproductive and Child Health (RCH) portal—to capture information on all RCH related services, including family planning, maternal health, child health, and immunization [27, 28]
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