Lysosomal Storage Disorders Support Society

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Our Journey and Achievements

2010
2010

  • LSDSS is founded in 2010 by like-minded parents and caregivers of LSD patients in India.
  • First International Rare Disease Day commemorated in India in New Delhi.
  • With the efforts of LSDSS, first ever LSD Task Force is set up by ICMR in collaboration with AIIMS, New Delhi.
2011
2011

  • LSDSS wins Genzyme's Patient Advocacy Leadership (PAL) Award for its "Continuing Medical Education Program" project, which aims to help provide medical professionals in four locations in India with proper information regarding LSDs with the aim of increasing more accurate diagnoses.
2012-13
2012-13

  • LSDSS secures first ever approval from Employees' State Insurance Corporation (ESIC) for ERT for a young MPS-1 (Hurler Syndrome) patient.
  • 400 patients write a letter to the then Prime Minister of India on the occasion of International Rare Disease Day at Mumbai, appealing to support the treatment for LSD patients.
2014
2014

  • LSDSS pioneers and convinces Shire plc (now Takeda) to start International Charitable Access Program in India for LSD treatment and secures treatment for 35 children in first batch.
  • The late former President of India A. P. J. Abdul Kalam praises the efforts made by LSDSS to create awareness about LSDs across India.
  • On LSDSS representation, the Drugs Controller General of India (DCGI) simplifies the approval process for import of life-saving drugs for LSDs and orders same-day issue of import permit.
2015-16
2015-16

  • LSDSS gets first ever judicial order in its favour in August 2015 in the State of Karnataka to facilitate treatment for Karnataka LSD children at the State’s expense.
  • LSDSS makes a representation to the Ministry of Health and Family Welfare and ICMR to set up a national rare disease patients registry.
2017-18
2017-18

  • Through judicial intervention by LSDSS, the Delhi High Court asks the Ministry of Health and Family Welfare to draft the first ever National Policy for the Treatment of Rare Diseases (NPTRD).
  • Hon. President of LSDSS, Mr. Manjit Singh, is appointed on the Board of the International Gaucher Alliance (IGA) for a term of 2 years.
  • LSDSS wins judicial case in the High Court of Kerala to start treatment for local LSDs patients at state expense.
  • After significant efforts, LSDSS succeeds in securing IGST exemption from the Ministry of Finance on the import of life-saving drugs for LSDs received through international charitable access programmes.
2019
2019

  • On intervention of LSDSS, ESIC agrees and files an affidavit in the Delhi High Court to provide free treatment to its employees’ eligible children suffering from LSDs and other rare diseases, irrespective of the cost of treatment.
  • Suyog Sathe, the National Executive Secretary of LSDSS, is appointed as a Director on the Board of the IGA.
  • The Government of India seeks additional time (9 months) from the judiciary and scraps the draft national rare disease policy under the false pretext of redrafting it to fix the deficiencies. LSDSS follows up on this matter.
2020-21
2020-21

  • The Government of India notifies new National Policy for Rare Diseases (NPRD). LSDSS has been striving since then to ensure effective implementation of the policy as it is not complete in letter and spirit.