stepsthatcount @stepsthatcount

New Delhi Joined June 2015

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Governance Now @governancenow

7 years ago

Rare diseases and not-so-rare bureaucratic delays | @LSDSS | governancenow.com/news/regular-s…

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Bengaluru based NGO has filed a PIL in SC to help patients suffering from rare diseases. Please read the news article to understand the ordeal families need to go through due to the cost of treatment. Certainly this also needs society's collective effort! bangaloremirror.indiatimes.com/opinion/sunday…

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Rare Diseases India @rarediseasesind

7 years ago

#EveryLifeIsPrecious: Pompe disease awareness efforts seek to raise awareness of Pompe disease and to mark the achievements in improving diagnosis and treatment. @AnujReports @PMelmeyer @pmahapat @kumarsumandr

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Strategic Partners Group @StrategicPartn4

7 years ago

And a glittering gold for @SPAGAsia's #EveryLifeIsPrecious campaign for Sanofi Genzyme. Congratulations team! #SABREAwardsAP @rarediseasesind

PRovoke Media @Provoke_News

7 years ago

And a glittering gold for @SPAGAsia's #EveryLifeIsPrecious campaign for Sanofi Genzyme. Congratulations team! #SABREAwardsAP @rarediseasesind

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Anil Raina @anilraina1969

7 years ago

#sanofi #sanofigenzyme #EveryLifeIsPrecious

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Rare Diseases India @rarediseasesind

7 years ago

Sangeeta Barde emphasizes on the need to combine the efforts of parents, caregivers and people affected to raise awareness about rare diseases. #EveryLifeIsPrecious

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Rare Diseases India @rarediseasesind

7 years ago

Enzyme replacement therapy (ERT) with Myozyme has the ability to treat the underlying cause of Pompe disease. #EveryLifeIsPrecious

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Rare Diseases India @rarediseasesind

7 years ago

'Right to Equality' applies to all and people with rare diseases are no different! Insurance firms will now not be able to reject claims based on genetic heritage. #EveryLifeIsPrecious

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Rare Diseases India @rarediseasesind

7 years ago

Diagnosis of #Fabry disease is often delayed by around 15 years and patients usually visit several doctors before a correct diagnosis is made. #EveryLifeIsPrecious

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Rare Diseases India @rarediseasesind

7 years ago

80% of #rarediseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not appear immediately. #EveryLifeIsPrecious

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Anil Raina @anilraina1969

7 years ago

sanofigenzyme.com/en/about-us/ou…

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Rare Diseases India @rarediseasesind

7 years ago

#Karnataka is the first State to take lead in the government's subsidy initiative for #rarediseases. Read more: bit.ly/2H8S8Y7 #EveryLifeIsPrecious

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Rare Diseases India @rarediseasesind

7 years ago

Dr Tedros Adhanom Ghebreyesus, WHO Director-General shares a message for rare diseases. Read on: bit.ly/2IoGt6S #EveryLifeIsPrecious

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Indira Jaising @IJaising

7 years ago

we must not allow the RTI to be destroyed,, knowledge is our only weapon of defence against oppression

The Leaflet @TheLeaflet_in

7 years ago

we must not allow the RTI to be destroyed,, knowledge is our only weapon of defence against oppression

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anand mahindra @anandmahindra

7 years ago

If this doesn’t move you, nothing will...

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Rare Disease UK @rarediseaseuk

7 years ago

A #raredisease is defined by the European Union as one that affects fewer than 5 in 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases and around five new rare diseases are described in medical literature each week.