Early diagnosis, affordability of treatment continue to remain hurdles in tackling rare diseases in India
3 weeks, 6 days ago

Early diagnosis, affordability of treatment continue to remain hurdles in tackling rare diseases in India

The Hindu  

Rare Diseases are defined as those that affect a small number of individuals: fewer than 1 in 2,000 people. In 2021, the United Nations rolled out the first resolution addressing the problems of people with rare diseases and families, calling on member states to provide access to safe and affordable healthcare. Under the aegis of the National Policy for Rare Diseases 2021, 12 Centres of Excellence and five NIDAN Kendra were identified by the Union Ministry of Health and Family Welfare’s Department of Biotechnology for diagnosis, genetic testing, genetic counselling, prevention, treatment and education at all levels, on rare diseases. Financial support of up to ₹50 lakh is available to patients suffering from all categories of rare diseases for treatment in any COE. Other areas to be focussed on include increasing awareness about rare diseases amongst the general public, particularly in creating inclusive work environments, and supportive and sustainable ecosystems.

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History of this topic

Over 70 million Indians living with rare diseases but challenges remain
3 weeks, 6 days ago

Over 70 million Indians living with rare diseases but challenges remain

India Today  

Rare diseases, also known as orphan diseases, affect a small percentage of the population but have profound health and economic impacts. In India, where an estimated 70 million people suffer from rare diseases, medical policies are critical in ensuring timely diagnosis, treatment access, and research development. High Treatment Costs: Many rare diseases require lifelong treatment, specialised care, and expensive medications. …

Registry of persons with rare diseases to be developed
2 months ago

Registry of persons with rare diseases to be developed

The Hindu  

The registry of persons with rare diseases in the State will become a reality this year, Health Minister Veena George said. Inaugurating a workshop on Rare Diseases here on Friday, she said that the State was trying its best to give a new lease of life to children with rare diseases through various initiatives. About 106 children are being provided …

Webinar sheds light on challenges posed by rare diseases
3 months, 1 week ago

Webinar sheds light on challenges posed by rare diseases

Deccan Chronicle  

Hyderabad:A webinar organised by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional toll on the 70 million Indians affected by rare diseases. A session titled 'The Global Burden of Rare Diseases: Issues and Challenges' was addressed by Hyderabad-based Indian Organization for Rare Diseases founder Prof. Ramaiah Muthyala. In India, costs are further compounded by reliance on …

A helping hand for people suffering from rare disorders
1 year ago

A helping hand for people suffering from rare disorders

The Hindu  

An awareness campaign on rare diseases was organised in Visakhapatnam on Thursday to commemorate Rare Diseases Day, which is observed every leap year on February 29 — the rarest day in the calendar. Titled ‘Feel the Rare’, the campaign was organised by Young Indians Vizag’s Accessibility, in association with Poornamidam and IIH Warriors India. “The aim of the programme was …

Hyderabad Doctors Urge Action on Comprehensive Policy and Enhanced Patient Care
1 year 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
1 year 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
1 year 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
1 year, 1 month 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 …

In a first, 'Made in India' drugs launched for rare diseases
1 year, 4 months ago

In a first, 'Made in India' drugs launched for rare diseases

Hindustan Times  

The Centre has come up with a game-changer special initiative by manufacturing four types of homegrown 'Made in India' drugs for rare diseases for the first time. India has initiated low-cost drugs for rare disease treatment after studying successful models from other countries. We prioritized drugs for 13 rare diseases and for sickle cell disease also," official sources from the …

The challenges in testing and treatment of rare diseases
1 year, 6 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, 6 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 …

KEM Hospital’s Rare Diseases Centre crippled by lack of infrastructure
1 year, 9 months ago

KEM Hospital’s Rare Diseases Centre crippled by lack of infrastructure

Hindustan Times  

Mumbai: KEM Hospital, one of the 11 Centres of Excellence for Rare Diseases recognised by the ministry of health and family welfare, is facing challenges in fulfilling its mandate. KEM Hospital’s CoE for rare diseases has 73 registered patients, the third-highest patient load in the country, and reportedly requires funds of ₹78 crore per year. “It would be great if …

Indian government exempts import duty on rare disease drugs
1 year, 11 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: …

Experts underscore need for healthcare funding for rare diseases
2 years ago

Experts underscore need for healthcare funding for rare diseases

Deccan Chronicle  

HYDERABAD: There is an urgent need for healthcare funding for rare diseases and that governments must prioritise this crucial component to aid people in managing rare diseases, experts noted at an event commemorating the International Rare Disease Day on Sunday. The event organised by the Lysosomal Storage Disorders Support Society, a patient support group for rare diseases, in collaboration with …

Over 5,000 Patients to be Studied for More Than 5 Yrs to Identify Novel Genes for Rare Paediatric Diseases
2 years, 4 months 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. …

Patients with rare diseases await support to start life-saving therapy despite Ministry’s go-ahead
2 years, 6 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
3 years 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, …

Kerala High Court Issues Directions To Regulate Crowd Funding For Treatment Of Rare Diseases
3 years, 2 months ago

Kerala High Court Issues Directions To Regulate Crowd Funding For Treatment Of Rare Diseases

Live Law  

The Kerala High Court has issued a set of directions to the State and the Central governments in an attempt to make available adequate funds for treating patients suffering from rare diseases, particularly for those who cannot afford such expenses, to enforce the rights guaranteed to the citizens under Article 21 of the Constitution. Therefore, learning that facilities for treatment …

A good start: The Hindu Editorial on government support for continual treatment of those with rare diseases
3 years, 11 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
4 years 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
5 years 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 …

Delhi HC comes to the rescue of a boy eligible under two public health schemes but covered by neither
5 years, 2 months ago

Delhi HC comes to the rescue of a boy eligible under two public health schemes but covered by neither

Firstpost  

Delhi High Court on Thursday intervened on behalf of an 11-year-old, who might die without a bone marrow transplant. Draft policy on rare diseases Earlier this week, on 13 January, the health ministry uploaded its National Policy for Rare Diseases 2020 on its website, inviting public comments and view on the draft policy till 10 February. The challenge with a …

Patients with rare diseases wait for support
5 years, 4 months ago

Patients with rare diseases wait for support

The Hindu  

The wait for financial support for treatment is getting longer for patients with rare diseases. Patient advocacy groups including the Lysosomal Storage Disorders Support Society and the Organisation for Rare Diseases in India have been repeatedly representing the case of patients with rare diseases with the Union Health Ministry. Non-commital response Early this year, the patient groups appealed to the …

K.C. Deepika on rare diseases in India
5 years, 8 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 …

Telangana sits on rare disease record
6 years, 6 months ago

Telangana sits on rare disease record

Deccan Chronicle  

Hyderabad: Despite the sanction of a corpus of Rs 100 crore for the treatment of rare diseases in India, there is no movement on implementing the National Policy for Treatment of Rare Diseases. There is some confusion about whether the policy is meant for above the poverty line or below the poverty line patients, but health advocacy groups state that …

Need to understand rare diseases: Kalam
10 years ago

Need to understand rare diseases: Kalam

The Hindu  

Former President of India A.P.J. Abdul Kalam on Friday said that a coordinated effort at the national level is the need of the hour for more research and understanding rare diseases in the country. The former president also felt that there was a need to share knowledge among patients, doctors and researchers to effectively tackle rare diseases. “There is a …

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