Our Journey and Achievements
- 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.
- 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.
- 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.
- 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.
- 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.
- LSDSS achieves a major breakthrough: the Delhi High Court, following a petition by the LSDSS, directs the Ministry of Health and Family Welfare to formulate a national policy for rare diseases. A well-thought-out National Policy for the Treatment of Rare Diseases (NPTRD) is subsequently drafted by a panel of genetic experts across India appointed by the court. The biggest highlight of the policy is an INR 100 crore (INR 1 billion) corpus fund for LSD patients, contributed to by both the central and state governments in a 60:40 ratio.
- 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.
- 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.
- In a major setback to the LSD community in India, the Government of India takes a complete U-turn and scraps the NPTRD, calling it unimplementable. It seeks additional time from the judiciary to redraft the policy.
- The Government of India notifies a new National Policy for Rare Diseases (NPRD), which proposes crowdfunding and CSR donations for the treatment of Group-3 rare diseases like LSDs. Since then, the LSDSS has been advocating to plug the gaps in this policy and ensure its effective implementation.
LSDSS wins the prestigious Global Genes "Champions of Hope" Award in the Foundations category. The award was conferred at the Global Genes Patient Advocacy Summit 2022 in San Diego, California, in recognition of the exemplary and impactful work done by the LSDSS over the years for LSD patients in India.