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RAISING AWARENESS FOR RARE DISEASES: RACE FOR 7 - A 7000 METER WALK FOR 7000 RARE DISEASES

RAISING AWARENESS FOR RARE DISEASES: RACE FOR 7 – A 7000 METER WALK FOR 7000 RARE DISEASES

16-02-2018

Bengaluru, February 15, 2018: The Organization for Rare Diseases India (ORDI), a non-profit organization with a mission to highlight and address the needs of the rare disease community in India, today announced the 2018 edition of Race for 7. Race for 7 is a 7000 meter walk/run to raise awareness for the 7000 documented rare diseases. What started as an awareness walk […]

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Raising Awareness for Rare Diseases: Race for 7

Raising Awareness for Rare Diseases: Race for 7

16-02-2018

Bengaluru, February 15, 2018: The Organization for Rare Diseases India (ORDI), a non-profit organization with a mission to highlight and address the needs of the rare disease community in India, today announced the 2018 edition of Race for 7. Race for 7 is a 7000 meter walk/run to raise awareness for the 7000 documented rare […]

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Raising Awareness for Rare Diseases: Race for 7

Raising Awareness for Rare Diseases: Race for 7

16-02-2018

Bengaluru, February 15, 2018: The Organization for Rare Diseases India (ORDI), a non-profit organization with a mission to highlight and address the needs of the rare disease community in India, today announced the 2018 edition of Race for 7. Race for 7 is a 7000-meter walk/run to raise awareness for the 7000 documented rare diseases. […]

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Organization for Rare Diseases India announces new edition of Race for 7 in Mumbai

Organization for Rare Diseases India announces new edition of Race for 7 in Mumbai

16-02-2018

Mumbai: The Organization for Rare Diseases India (ORDI), a non-profit organization with a mission to highlight and address the needs of the rare disease community in India, on Thursday announced the 2018 edition of Race for 7. This marks the first time that Race for 7 will be conducted in Mumbai. Race for 7 is […]

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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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