Mandatory Newborn Screening May Cut Deaths Due to Rare Diseases
5 years, 10 months ago

Mandatory Newborn Screening May Cut Deaths Due to Rare Diseases

The Quint  

According to the health advocacy groups fighting for the cause of rare diseases in India, the medicines to treat such diseases range anywhere between Rs 1 lakh to Rs 50 lakh per month. In 2017, the National Policy for Treatment of Rare Diseases was announced by the Indian government with a corpus of Rs 100 crore to provide financial assistance for the treatment of rare disease patients. National bodies working for the well being of patients with rare diseases have urged the government for setting up genetic screening laboratories in every government hospitals so that newborns can be screened if they have any life threatening genetic disorder. At present, only a few top government hospitals such as the All India Institute of Medical Sciences and Post Graduate Institute of Medical Education and Research, Chandigarh apart from the private hospitals have the newborn screening tests, making it extremely costly and unaffordable for the people from low-income group, a strata from where genetic disorder cases are frequent.

Rare Diseases Diseases Rare Disease  patients  screening  hospitals  rs  newborn  cut  treatment  deaths  rare  disease  genetic  mandatory  diseases  policy

History of this topic

Hyderabad Doctors Urge Action on Comprehensive Policy and Enhanced Patient Care
10 months, 1 week ago

Hyderabad Doctors Urge Action on Comprehensive Policy and Enhanced Patient Care

Deccan Chronicle  

Hyderabad: With Rare Diseases Day on 29 February, healthcare experts are calling for a comprehensive Rare Disease Policy as the need of the hour. According to the World Health Organization, rare diseases typically affect fewer than 1 in 1,000 individuals, and in India, around 70 million people grapple with 450 rare diseases, including the particularly debilitating Spinal Muscular Atrophy. Dr. …

Despite decades of advocacy, and govt backing, care for rare diseases not optimal
10 months, 1 week ago

Despite decades of advocacy, and govt backing, care for rare diseases not optimal

The Hindu  

In the field of rare diseases, in India, what did not happen for 20 years, was dramatically hustled through over the last couple of years. It was nearly a dream come true for patients living with rare diseases and their families – the policy also factors in ways to lower the exorbitant cost of treatment, and boost indigenous research. The …

India’s fight against rare diseases
10 months, 1 week ago

India’s fight against rare diseases

The Hindu  

The tragic death of 19-year-old child actress Suhani Bhatnagar from dermatomyositis, a rare disorder that causes inflammation in muscles, came in the same month as Rare Disease Day, which is marked today. Rare diseases in India India accounts for one-third of the global rare disease incidence, with over 450 identified diseases. Though our country lacks a standard definition for rare …

Kerala plans State policy on rare diseases
11 months, 1 week ago

Kerala plans State policy on rare diseases

The Hindu  

The Kerala government is planning to devise a State-level policy, a first-of-its kind initiative, for the treatment and support of patients with rare diseases. Centre of Excellence The Union government announced a National Policy on Rare Diseases in 2021, and designated 11 Centres of Excellence in the country for their treatment. In Kerala, the Sree Avittam Thirunal Hospital, Government Medical …

The challenges in testing and treatment of rare diseases
1 year, 3 months ago

The challenges in testing and treatment of rare diseases

The Hindu  

Vinutha M. is a 23-year-old pharmacy student in the nondescript town of Nelamangala, about 30 kilometres northwest of Bengaluru. Karnataka was the first State to initiate treatment of rare diseases in 2016, even when there was no policy in place,” says Dr. Sanjeeva G.N., professor of Paediatrics at IGICH and CoERD nodal officer. However, “Of the six patients, we have …

India reports far fewer people with orphan diseases
1 year, 4 months ago

India reports far fewer people with orphan diseases

The Hindu  

Much of our conversation about health leads to the talk of a few common ailments that afflict several of our acquaintances — diabetes probably tops this list. Initiatives by patient groups Global numbers indicate that there are around 7,000 rare diseases affecting 300 million people. The Government’s National Policy for Treatment of Rare Diseases has only recently started making its …

Indian government exempts import duty on rare disease drugs
1 year, 9 months ago

Indian government exempts import duty on rare disease drugs

Deccan Chronicle  

New Delhi: The Central government on Thursday announced exemption on basic customs duty on all drugs and food for special medical purposes imported for personal use for treatment of all rare diseases. It is estimated that globally around 6000 to 8000 rare diseases exist with new rare diseases being reported in the medical literature regularly. Moreover, they disproportionately impact children: …

NCP MP raises concern over rare diseases, says no patient has benefited from new policy
2 years ago

NCP MP raises concern over rare diseases, says no patient has benefited from new policy

The Hindu  

Rajya Sabha MP from the Nationalist Congress Party Fauzia Khan on Friday raised concerns over the benefits of the National Policy of Rare Diseases not reaching any patient with rare diseases even after several months since its introduction. In May, it increased the funding support to ₹50 lakh per patient with diseases classified as rare for their treatment. However, the …

Over 5,000 Patients to be Studied for More Than 5 Yrs to Identify Novel Genes for Rare Paediatric Diseases
2 years, 1 month ago

Over 5,000 Patients to be Studied for More Than 5 Yrs to Identify Novel Genes for Rare Paediatric Diseases

News 18  

The Ministry of Science and Technology and the Department of Biotechnology have recently launched the Mission Programme on Pediatric Rare Genetic Disorders to map rare genetic diseases among children. Our aim is to identify the genes causing these diseases and then develop ways to treat them.” There are around 7,000 rare diseases like Down’s Syndrome, Spinal Muscular Atrophy, Thalassemia etc. …

CDFD to pilot study on ‘paediatric rare genetic disorders’ in Indian populations
2 years, 2 months ago

CDFD to pilot study on ‘paediatric rare genetic disorders’ in Indian populations

The Hindu  

The Centre for DNA Fingerprinting and Diagnostics under the Department of Biotechnology on Tuesday announced the launch of the first ever ‘Mission on Paediatric Rare Genetic Disorders ‘, a countrywide screening programme in association with 20 other institutions to decode the unknown genetic mutations causing such diseases. The mission intends to create awareness, achieve genetic diagnosis, discover and characterise novel …

Patients with rare diseases await support to start life-saving therapy despite Ministry’s go-ahead
2 years, 4 months ago

Patients with rare diseases await support to start life-saving therapy despite Ministry’s go-ahead

The Hindu  

Despite specific instructions and operational guidelines issued by the Health Ministry to help persons with rare diseases in India, families of these persons in a letter to Health Minister Mansukh Mandaviya, earlier this week, said that as per records available, none of the eight Centres of Excellence – which are to carry-out the protocol — have even started the process …

Focus on policies to encourage made in India drugs against rare diseases
2 years, 10 months ago

Focus on policies to encourage made in India drugs against rare diseases

Hindustan Times  

The Covid-19 pandemic has underscored the need to be more cautious with health and take a critical look at the pre-existing healthcare systems worldwide. This is largely because most of these RDs are chronic and degenerative in nature, causing disabilities to rise in the patients as they grow old; lack of adequate or proper screening and diagnosis of RDs patients, …

Rare Genetic Disease Of Infant: Karnataka HC Lauds Centre For Swift Action, To Be Further Examined As Per National Rare Diseases Policy
3 years, 3 months ago

Rare Genetic Disease Of Infant: Karnataka HC Lauds Centre For Swift Action, To Be Further Examined As Per National Rare Diseases Policy

Live Law  

The Karnataka High Court on Thursday expressed its happiness and appreciated the swift action taken by the Central government in providing medical attention to a one and a half-year-old boy, who is suffering from a rare Spinal Muscular Atrophy disease. Advocate M N Kumar appearing for the Central government filed a memo before the court stating that pursuant to the …

A good start: The Hindu Editorial on government support for continual treatment of those with rare diseases
3 years, 9 months ago

A good start: The Hindu Editorial on government support for continual treatment of those with rare diseases

The Hindu  

It is binding on a welfare state to take care of every single citizen. A good start, it offers financial support for one-time treatment of up to ₹20 lakh, introduces a crowdfunding mechanism, creates a registry of rare diseases, and provides for early detection. Rare diseases are broadly defined as diseases that infrequently occur in a population, and three markers …

‘You can carry on or give up’: Families living with rare diseases
3 years, 10 months ago

‘You can carry on or give up’: Families living with rare diseases

Al Jazeera  

Daniel and Patricia Lewi were worried about their 15-month-old daughter Amelie. “We got the structure into place, spoke to contacts in pharma … You set up a charity thinking you’re going to save your child, and then you realise you can’t,” Daniel says. “I’m a typical case, even though people get diagnosed earlier today,” says Wakelin, who is now the …

Hyderabad: Centre removes data on rare diseases prevalence rat
4 years, 10 months ago

Hyderabad: Centre removes data on rare diseases prevalence rat

Deccan Chronicle  

Hyderabad: How many cases of rare diseases does India have? This is because the new policy document of rare diseases of the Union health ministry has removed the earlier prevalence rate of 6 per cent of the population. The 2017 Rare Diseases Policy took the prevalence rate of countries in the West and tabulated that but they found that the …

Union Health Ministry releases Rare Diseases Policy, implementation might be tough
4 years, 11 months ago

Union Health Ministry releases Rare Diseases Policy, implementation might be tough

Firstpost  

The government will provide financial support of up to Rs 15 lakh under its Rashtriya Arogaya Nidhi scheme for the one-time treatment of rare diseases, according to the much-awaited draft Rare Diseases Policy. Under the draft National Policy for Rare Diseases released on Monday, beneficiaries would not be limited to Below Poverty Line families, but will also cover 40 percent …

K.C. Deepika on rare diseases in India
5 years, 6 months ago

K.C. Deepika on rare diseases in India

The Hindu  

Nidhi was seven years old when she was diagnosed with a disease few have heard of — Pompe. Nidhi’s father, Prasanna Kumar B. Shirol, is co-founder of the Organisation for Rare Diseases India, an umbrella organisation that says it represents the collective voice of all patients with rare diseases in India. “The average diagnosis period worldwide is seven years, even …

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