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Marriages Within Family Spawn Genetic Clinics

Marriages Within Family Spawn Genetic Clinics

11-11-2015

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FDA awards research grants to boost product development for patients with rare diseases

FDA awards research grants to boost product development for patients with rare diseases

26-10-2015

The U.S. Food and Drug Administration today announced it has awarded 18 new research grants totaling more than $19 million to boost the development of products for patients with rare diseases, which affect the lives of nearly 30 million Americans. These new grants were awarded to principal investigators in ten states, with research spanning clinical […]

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Study: RNA editing technique shows promise in treating rare, severe form of muscular dystrophy

Study: RNA editing technique shows promise in treating rare, severe form of muscular dystrophy

26-10-2015

An RNA editing technique called “exon skipping” has shown preliminary success in treating a rare and severe form of muscular dystrophy that currently has no treatment, based on a new study from Northwestern Medicine and the University of Chicago. Children with the disease lose significant muscle strength early in life. The discovery stems from the […]

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British doctors hail 'cure for blindness' with successful treatment of age-related macular degeneration

British doctors hail ‘cure for blindness’ with successful treatment of age-related macular degeneration

21-10-2015

British surgeons have taken a “big step forward” towards curing the most common form of blindness by developing and successfully performing a ground breaking operation. Surgeons at London’s Moorfields Eye Hospital carried out the first operation on a female patient with wet age-related macular degeneration (AMD), characterised by leaking blood vessels. They now believe that […]

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Treat rare disease patients for free

Treat rare disease patients for free

06-09-2015

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Amicus bags PhIII rare disease drug in $847M Scioderm buyout

Amicus bags PhIII rare disease drug in $847M Scioderm buyout

03-09-2015

Amicus Therapeutics has stepped in to snap up the late-stage rare disease biotech Scioderm, beefing up its orphan drug pipeline in exchange for $229 million in stock and cash along with a promise of up to $618 million more for meeting a slate of milestones. The buyout leaves Amicus ($FOLD) with its lead drug Galafold […]

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बच्चों को बचाएं दुर्लभ बीमारियों से

बच्चों को बचाएं दुर्लभ बीमारियों से

19-03-2015

दुर्लभ बीमारियों के शिकार अक्सर छोटे और कम उम्र के बच्चे होते हैं। विशेषज्ञों का मानना है कि बच्चों के शरीर में किसी भी तरह की अजीब हरकत या असाधारण व्यवहार जैसे अगर बच्चे का विकास न हो रहा हो, वह ज्यादा चिड़चिड़ा रहने लगा हो, उसे दौरे आते हों, शरीर से अजीब-सी गंध आती […]

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Often neglected, rare diseases now have a collective voice

Often neglected, rare diseases now have a collective voice

19-03-2015

“Information technology (IT) has emerged as a greatest enabler of recent times. ORDI is determined to leverage IT in serving rare disease cause by being an umbrella organization for information contribution, collection, consumption and propagation on rare diseases. ORDI also serves as a platform that unites, educates and connects rare disease patients, doctors, scientists, volunteers, […]

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Indian needs extra health budget for rare diseases

Indian needs extra health budget for rare diseases

28-02-2015

New Delhi, 27th February, 2015: Rare Diseases Day was observed on 27th February to raise awareness about rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. Addressing a press meet , Dr A Marthanda Pillai and Dr K K Aggarwal, National President and Honorary Secretary General […]

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Delhi HC asks AIIMS to provide free treatment to genetic disorder patient

Delhi HC asks AIIMS to provide free treatment to genetic disorder patient

28-02-2015

New Delhi: The Delhi High Court Friday directed AIIMS to provide free treatment to a two-year-old boy, suffering from Gaucher’s disease, a genetic disorder. Justice Rajiv Shakdher also issued notice to union health ministry, Delhi government and AIIMS and sought their response by May 5. It also asked the ministry to consider increasing the health […]

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