Parents look for support for their five-year-old suffering with rare Hunter’s syndrome;

  • Five-year-old Shaurya of Ranchi is fighting a tough battle against slow death in the wake of lysosomal storage disorder commonly known as Hunter's syndrome, a rare genetic disorder and perhaps the first such case of Jharkhand.  [ View

Hunter Syndrome A Rare Disease

  • This kid is the rare illness, did not help the bone would freeze  [ View

E.TV Bihar & Jharkhand -

  • Save Shaurya - Fighting with a life threatening rare disease.  [ Watch Video

Born unlucky: Challenges people with rare diseases face just to stay alive

  • An estimated 3,700 people suffer from rare diseases that cost lakhs to treat. [download ]
  • ‘Indian pharma companies don’t make drugs because of insufficient revenue’  [ View

Patients With Rare Diseases Hold a DHARNA In Freedom Park
1st November, 2014, Bangalore


1st Stakeholders’ Roundtable Discussion on Welfare of Rare Disease patients in Rajasthan
23rd December, 2014, Jaipur

First International Gaucher Day 26th July 2014

 

MPS AWARENESS DAY 15th May New Delhi

Rare Disease Day - Chennai.
  • Deccan Chronicle-21.03.14 Pg No.5 [ Download ]
  • Dina Karan-21.03.14 Pg No.5 [ Download ]
  • Eenadu-21.03.14 Pg No.4 [ Download ]
  • Hindu-21.03.14 Pg No.2 [ Download ]
  • Hindu Tamil-21.03.14 Pg No.4 [ Download ]
  • Rajasthan Patrika-21.03.14 Pg No.2 [ Download ]
  • Sakshi-21.03.14 Pg No.1 [ Download ]
  • Sakshi-21.03.14 Pg No.12 [ Download ]
  • Times of India-21.03.14 Pg No.4 [ Download ]

 



   

Silent March on Gaucher Disease Awareness Month : 14 September 2013, New Delhi

 
 
 
Manjit Singh - President Has Had Series Of Meetings From September 21 To 27th Deptember With Prominent Govt Officials, Member Of Parliament, State Ministers, State Secretaries, & Ex President Of India Dr. Abdul Kalaam Azad And Reiterated The Demand Of Lsdss To Create Acorpus Fund To Import The Ert Drugs To Save Lsd Children, Include Lsds Drugs In Life Saving Drugs - Duty Exempted List & Cover Lsds Under Disabilities Act.All Of Them Assured To Help Expedite Our Representations.He Met Mr. Subodh Kant Sahay- Mp & Former Tourism Minister, Mrs Santosh Chaudhury, Minister For State - Health & Family Welfare, Delhi, Mr. Ck Mishra, Addl Heath Secretary, Dr. Jagsidh Kaur, Joint Seretary Health,Mr Sk Srivatva, Financial Advisor- Health Besides Others.
   

 

 


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