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Andhra Pradesh To Launch Rare Disease Policy, Expand Universal Newborn Screening

<span>Andhra Pradesh</span> is set to launch a <span>Rare Disease Policy</span>, aligned with the <span>National Policy for Rare Diseases</span> (NPRD), 2021, to improve diagnosis, treatment, and financial support for patients living with rare diseases.

The proposed policy will provide free diagnostic tests, specialized treatment, and financial assistance to affected families, Health Minister Y. Satya Kumar Yadav announced while addressing the <span>Rare Diseases Care</span> and Draft Policy Consultation at Dr NTR University of Health Sciences.

<h2>What's Included in Andhra Pradesh's Rare Disease Policy? </h2>

As part of the proposed policy, the state government plans to:

<ul><li>Establish referral cents for rare diseases in Kurnool, Tirupati, and Visakhapatnam.</li><li>Explore designating a government hospital as a Centre of Excellence for rare disease treatment.</li><li>Create a state registry for diseases identified by the Indian Council of Medical Research (ICMR) to better understand the disease burden.</li><li>Introduce universal newborn (neonatal) screening to enable early detection of rare diseases.</li><li>Mobilize donor support to help patients meet the high cost of treatment.</li></ul>

The minister said the government is committed to ensuring access to quality healthcare for rare disease patients regardless of their financial status. He also stressed the importance of increasing public awareness to facilitate early diagnosis and timely intervention.

Also read: <a href="https://www.healthandme.com/health-wellness/rare-diseases-day-how-ai-is-transforming-early-diagnosis-article-153719453" data-type="tilCustomLink">How AI Is Transforming Early Diagnosis of Rare Diseases</a>

Further, to improve access to treatment, the state will hold a meeting with pharmaceutical companies in the first week of July to discuss the production, availability, and distribution of medicines for rare diseases.

The government also plans to encourage the pharmaceutical industry to provide financial and other support to patients.

Health Secretary S. Suresh Kumar said integrating rare disease patients with the Ayushman Bharat Digital Mission would improve treatment tracking and continuity of care. NGOs, caregivers, patients, and medical experts participating in the consultation welcomed the government's initiative and offered recommendations for the draft policy.

<h2>What Is the National Policy for Rare Diseases (NPRD)?</h2>

The National Policy for Rare Diseases (NPRD), 2021, was introduced to improve access to diagnosis, treatment, and financial assistance for patients with rare diseases.

The policy classifies rare diseases into three categories:

<ul><li>Diseases that can be treated with a one-time curative intervention.</li><li>Diseases requiring long-term or lifelong treatment.</li><li>Diseases for which effective treatment is still under research.</li></ul>

Under the Rashtriya Arogya Nidhi (RAN) scheme, eligible patients can receive financial assistance of up to Rs 50 lakh for specified rare diseases covered under the policy.

<strong>Read More: </strong><a href="https://www.healthandme.com/health-news/ebola-outbreak-the-unusual-symptoms-seen-in-patients-infected-with-bundibugyo-article-154757437" data-type="tilCustomLink">Ebola Outbreak: The Unique Symptoms Seen In Patients Infected With Bundibugyo</a>

The World Health Organization (WHO) defines a rare disease as a chronic, often debilitating or life-threatening condition affecting one or fewer people per 1,000 population.

According to the WHO's International Classification of Diseases (ICD-11), more than 5,500 rare diseases have been identified, while globally there are an estimated over 7,000 distinct rare diseases affecting more than 300 million people.

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In India, a disease is generally considered rare if it affects fewer than one in 2,500 people. Most rare diseases are genetic and are frequently misdiagnosed because of limited awareness, delayed diagnosis, and inadequate access to specialized care.

According to estimates by the Foundation for Research on Rare Diseases and Disorders, more than 70 million Indians are living with rare diseases. Common examples include Gaucher disease, Duchenne muscular dystrophy, and lysosomal storage disorders.

Despite affecting relatively small numbers individually, rare diseases collectively represent a significant public health challenge due to limited treatment options, delayed diagnosis, and the high financial burden on patients and their families.

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Andhra Pradesh is set to launch a Rare Disease Policy, aligned with the National Policy for Rare Diseases (NPRD), 2021, to improve diagnosis, treatment, and financial support for patients living with rare diseases.The proposed policy will provide free diagnostic tests, specialized treatment, and financial assistance to affected families, Health Minister Y. Satya Kumar Yadav announced while addressing the Rare Diseases Care and Draft Policy Consultation at Dr NTR University of Health Sciences.What's Included in Andhra Pradesh's Rare Disease Policy? As part of the proposed policy, the state government plans to:Establish referral cents for rare diseases in Kurnool, Tirupati, and Visakhapatnam.Explore designating a government hospital as a Centre of Excellence for rare disease treatment.Create a state registry for diseases identified by the Indian Council of Medical Research (ICMR) to better understand the disease burden.Introduce universal newborn (neonatal) screening to enable early detection of rare diseases.Mobilize donor support to help patients meet the high cost of treatment.The minister said the government is committed to ensuring access to quality healthcare for rare disease patients regardless of their financial status. He also stressed the importance of increasing public awareness to facilitate early diagnosis and timely intervention.Also read: How AI Is Transforming Early Diagnosis of Rare DiseasesFurther, to improve access to treatment, the state will hold a meeting with pharmaceutical companies in the first week of July to discuss the production, availability, and distribution of medicines for rare diseases.The government also plans to encourage the pharmaceutical industry to provide financial and other support to patients.Health Secretary S. Suresh Kumar said integrating rare disease patients with the Ayushman Bharat Digital Mission would improve treatment tracking and continuity of care. NGOs, caregivers, patients, and medical experts participating in the consultation welcomed the government's initiative and offered recommendations for the draft policy.What Is the National Policy for Rare Diseases (NPRD)?The National Policy for Rare Diseases (NPRD), 2021, was introduced to improve access to diagnosis, treatment, and financial assistance for patients with rare diseases.The policy classifies rare diseases into three categories:Diseases that can be treated with a one-time curative intervention.Diseases requiring long-term or lifelong treatment.Diseases for which effective treatment is still under research.Under the Rashtriya Arogya Nidhi (RAN) scheme, eligible patients can receive financial assistance of up to Rs 50 lakh for specified rare diseases covered under the policy.Read More: Ebola Outbreak: The Unique Symptoms Seen In Patients Infected With BundibugyoWhat Is a Rare Disease?The World Health Organization (WHO) defines a rare disease as a chronic, often debilitating or life-threatening condition affecting one or fewer people per 1,000 population.According to the WHO's International Classification of Diseases (ICD-11), more than 5,500 rare diseases have been identified, while globally there are an estimated over 7,000 distinct rare diseases affecting more than 300 million people.      In India, a disease is generally considered rare if it affects fewer than one in 2,500 people. Most rare diseases are genetic and are frequently misdiagnosed because of limited awareness, delayed diagnosis, and inadequate access to specialized care.According to estimates by the Foundation for Research on Rare Diseases and Disorders, more than 70 million Indians are living with rare diseases. Common examples include Gaucher disease, Duchenne muscular dystrophy, and lysosomal storage disorders.Despite affecting relatively small numbers individually, rare diseases collectively represent a significant public health challenge due to limited treatment options, delayed diagnosis, and the high financial burden on patients and their families.

andhra pradesh to launch rare disease policy, expand universal newborn screening

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Andhra Pradesh To Launch Rare Disease Policy, Expand Universal Newborn Screening

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Andhra Pradesh To Launch Rare Disease Policy, Expand Universal Newborn Screening

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