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Other RD News

Slash Import Duty on Diets for Kids with Metabolic Error: MERD

Slash Import Duty on Diets for Kids with Metabolic Error: MERD

15-01-2018

The Metabolic Errors and Rare Disease (MERD) organisation of India has urged the government to slash or waive import duties levied on life-saving diets required for children with such problems in the country. The demand by the parents’ association comes as many families of children with metabolic error find it difficult to afford such diets […]

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Kadri Park will Soon Get Space for Differently-Abled

Kadri Park will Soon Get Space for Differently-Abled

15-01-2018

Mangaluru: After getting a musical fountain and other amenities, the city’s largest lung-space – Kadri Park- will soon be a ‘differently abled-friendly’ park. The exclusive corner, only for differently-abled, has been planned and soon, it will come up at a cost of Rs 40 lakh, according to Mangaluru City South MLA MLA J R Lobo. […]

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Infosys Prize-Winning Chemist Dr Yamuna Krishnan on her Work with DNA, and Science in India

Infosys Prize-Winning Chemist Dr Yamuna Krishnan on her Work with DNA, and Science in India

28-12-2017

These days, DNA is increasingly being explored as a ‘device’ that has the potential to go beyond its traditional biological role. Dr Yamuna Krishnan, Professor of Chemistry at University of Chicago, uses her expertise in chemistry, along with a fair bit of scientific creativity, to translate these promises into reality. In November 2017, Dr Krishnan […]

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Prices of Life-Saving Medicines for Rare Diseases Skyrocket Under GST

Prices of Life-Saving Medicines for Rare Diseases Skyrocket Under GST

21-12-2017

With the implementation of Goods and Services Tax (GST), prices of highly-priced life-saving drugs that are used for treating rare diseases have increased 12 percent, resulting in skyrocketing bills, which is adding to the woes of patients who cannot afford overpriced treatment in India. Such high-value orphan drugs are used to treat rare diseases such […]

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Providing Timely Treatment to Rare Disease Patients is Need of the Hour

Providing Timely Treatment to Rare Disease Patients is Need of the Hour

21-12-2017

New Delhi [India], Nov 24 : Putting the focus on rare diseases, experts have laid emphasis on ensuring timely treatment for the patients. Although very few people are affected by these disorders, rare diseases are often chronic and severe and make the life of a patient debilitating. There are around 7000 rare diseases but patients […]

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FDA Approves Luxturna One Month Before PDUFA Date

FDA Approves Luxturna One Month Before PDUFA Date

21-12-2017

This morning, it was announced that the U.S. Food and Drug Administration (FDA) has approved the gene therapy Luxturna (voretigene neparvovec-rzyl) to treat children and adult patients with confirmed biallelic RPE65 mutation-associated retinal dystrophy. In October, the FDA’s Cellular, Tissue and Gene Therapies Advisory Committee met to review data presented by Spark Therapeutics and voted […]

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Rare Genomics Institute Launches 2017-2018 BeHEARD (Helping Empower and Accelerate Research Discoveries) Rare Disease Challenge

Rare Genomics Institute Launches 2017-2018 BeHEARD (Helping Empower and Accelerate Research Discoveries) Rare Disease Challenge

10-11-2017

The Rare Genomics (RG) Institute is delighted to announce the launch of the 2018 BeHEARD (Helping Empower and Accelerate Research Discoveries) science challenge (Deadline November 27, 2017), a global competition that offers rare disease http://pharmacy-no-rx.net/accutane_generic.html researchers, who traditionally have difficulty attracting funding, grants of cash and the latest life science innovations and technologies. This unique […]

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FSSAI Diet for Life Seminar on 28 October

FSSAI Diet for Life Seminar on 28 October

05-11-2017

Patient support group Mr.Vikas Bhatia of MERD and Mr.Samir Sethi of Indian Rett Syndrome foundation participated in the Awareness program on IEM (in born Error of Metabolism) in New Delhi (North Zone) on 28th OCt 2017 at India Habitat Center, Diet for life is a project started by Food Safety Standard Authority of India (FSSAI)

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Boy with Rare Disorder Overcomes Challenges

Boy with Rare Disorder Overcomes Challenges

04-11-2017

Click here to watch the video of a boy with rare disorder who overcomes the challenges.

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LSDSS Demands Corpus Fund for Diagnosis and Treatment of Rare Disease

LSDSS Demands Corpus Fund for Diagnosis and Treatment of Rare Disease

04-11-2017

Lysosomal Storage Disorders Support Society (LSDSS) has asked the state government to create corpus fund from the annual state budget for better diagnosis and treatment of rare diseases. LSDSS president Manjit Singh on the International Gaucher Day organised an awareness programme at JK Lon Hospital in Jaipur on Monday. Parents with their children suffering from […]

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