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Other RD News

Expatriate mother in Muscat donates liver to save her son

Expatriate mother in Muscat donates liver to save her son

19-05-2014

Muscat: Motherhood is all about caring. It is said that motherhood is where all the love begins and ends. “I would do just about anything my kid wants. For him, there’s nothing which I can’t do,” an expatriate mother in Muscat who is readying herself to donate her organ to save the life of her […]

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Early intervention centres in Kerala soon

Early intervention centres in Kerala soon

07-05-2014

To screen developmental delays and disabilities in children. The departments of Health and Social Justice are launching a major joint initiative to tackle childhood disabilities through the early identification of developmental delays and disabilities and early interventions so that these conditions do not become permanent or debilitating. District Early Intervention Centres (DEICs) will soon be […]

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Patients Sought For Biomarin Clinical Trial

Patients Sought For Biomarin Clinical Trial

06-05-2014

BioMarin is currently seeking patients for a Phase 3 clinical trial in Late Onset Pompe Disease. This phase 3 study incorporates a switchover design in which all patients switch directly from Myozyme? or Lumizyme?1 to the experimental drug BMN 701 without missing doses, to determine if patients currently on enzyme replacement therapy with Myozyme? or […]

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10 misconceptions about children with autism busted!

10 misconceptions about children with autism busted!

05-05-2014

April 2 is World Autism Awareness Day. Autistic children are often misunderstood. Their actions are sometimes thought of in a manner that might be derogatory or they are clubbed with children with other disabilities. But did you know that autism is one of the most commonly misunderstood conditions? Well, here is an article by renowned […]

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India signs treaty on published works for visually impaired

India signs treaty on published works for visually impaired

02-05-2014

India has signed an international treaty which will facilitate access to published works for persons who are blind, visually http://premier-pharmacy.com/product-category/gastrointestinal/ impaired or otherwise print disabled, an official release said Thursday. The release said the ‘Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled’ was signed […]

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Shame to all those who have not voted.

Shame to all those who have not voted.

18-04-2014

Look at the spirit of Dhanya, suffering from Rare Disease “BRITTLE BONE DISEASE” for exercising her right in spite of her condition and poor disable friendly infrastructure in this country. No wonder such people keep suffering, Thanks to all those who responsible for such state after 67 years of Independence. Live long Rare Disease patients.

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Rare diseases and Innovation

Rare diseases and Innovation

01-04-2014

We must applaud ourselves. We must applaud ourselves because we have toiled and advocated the causes of affordable healthcare and access to drugs. We have fought for cancer and malaria medication to be made available at naught a cost to the poor, ailing millions (well with cancer we tried anyway). While battle lines are yet […]

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Over 70 mn Indians afflicted with rare diseases

Over 70 mn Indians afflicted with rare diseases

01-04-2014

The Foundation for Research on Rare Diseases and Disorders pegs the number of patients in India afflicted with one of more than 7,000 rare diseases at over 70 million. Attempting to make rare diseases in India diagnosable and treatable, the Organisation for Rare Diseases India (ORDI), an initiative by doctors, organisations and government bodies, was […]

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Why Rare Diseases Need Clinical Research

Why Rare Diseases Need Clinical Research

01-04-2014

In 2009, the Hindi movie Paa was released to wide acclaim in India. Starring Amitabh Bachchan, Abhishek Bachchan and Vidya Balan, the film, which focused on a father-son relationship, told the poignant story of a child suffering from a genetic condition known as Progeria which causes premature ageing. In 2010, Shah Rukh Khan in the […]

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There are so many people in India that even patients with rare diseases can be found in sufficient numbers to conduct good scientific research

There are so many people in India that even patients with rare diseases can be found in sufficient numbers to conduct good scientific research

01-04-2014

Michael Hauser,a Duke professor of medicine and ophthalmology, who collaborates with an eye institute in Hyderabad, India to study a childhood form of glaucoma, was quoted in a recent article published on the Duke website about how Global Research can harness Domestic benefits. To prove his point, it was also mentioned that Hauser?s team in […]

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