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Rare disease policy a mockery of right to health, says Bengaluru advocacy group

“The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The lack of foresight shines through the cold and thoughtless draft,” said Prasanna Shirol,...

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One of our Gaucher patient from Bengaluru who is on treatment now selected for Karnataka under 16 Cricket Team . What a proud moment for Rare Disease community

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Central Govt’s Rare Diseases Policy Does Not Define The Diseases

Pune, April 5, 2021: While the Central Government recently announced the National Policy for Rare Diseases, 2021, it has been observed that the policy has failed to define rare diseases...

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Health Minister Vardhan approves National Policy for Rare Diseases, 2021

Beneficiaries for such financial assistance will not be limited to BPL families, but the benefit will be extended to about 40 per cent of the population who are eligible under...

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Disquiet over govt.’s new policy for rare diseases

Click the link for website: https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece...

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Opinion- India’s healthcare system needs a concrete rare disease policy – Prasanna Shirol Executive Director

The Delhi High Court ordered the Centre to finalise and notify the National Health Policy for Rare Diseases by March 31 Rare diseases, as the name suggest, are those diseases...

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UDNI Patient Engagement Meeting

Attended the  UDNI Patient Engagement Meeting,  planning how to bring more of the patients’ perspective into UDNI....

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New Advancements in Genetic Analysis For Rare Disease Delivering Accuracy & Affordability

Click for the website: https://www.wfmz.com/news/pr_newswire/pr_newswire_health/new-advancements-in-genetic-analysis-for-rare-disease-delivering-accuracy-affordability/article_fc1fafad-8354-5176-8aa1-b7b64f43111e.html ORLANDO, Fla., March 19, 2021 /PRNewswire-PRWeb/ — What is genetic analysis? Genetic analysis is the process of screening a person for the possibility of a genetic syndrome or...

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Know what diseases fall under Rare Diseases category

Click for the article: https://www.indiatvnews.com/health/know-what-diseases-fall-under-rare-diseases-category-691930 Know what diseases fall under Rare Diseases category As the name suggests Rare Diseases are those that are less in occurrence than compared to other...

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What price a child’s life? India’s quest to make rare disease drugs affordable

Parents whose only hope was For three years, Vidya tried to find the cause of her son’s recurrent fevers and low cognitive development. When she found out, she was devastated....

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