About the Society      [ Download Brochure ]

Lysosomal Storage Disorders Support Society (LSDSS) is registered and headquartered in Delhi and headed by a group of parents of LSD Patients who know what it’s like to live with Lysosomal Storage Disorders.

LSDSS has been incorporated as a registered non-profit organization to raise awareness and educate the general people about various Rare Genetic life threatening LSDs.

The Society will track worldwide research into the causes, treatment and management of these diseases. It will also arrange, co-ordinate and try to increase the help and facilities available for diagnosis, consultation and treatment of those suffering from these diseases. The diagnosis of LSDs unlike any other rare disorder is the first and most critical and frustrating challenge for any one with a rare disorder since one cannot treat what one does.

The Society will represent & request the Central & State Governments representatives for the immediate need of financial support & establishment of diagnostic facilities in all major hospitals of India for LSDs patients vis a vis formulate if not specific  long term Health Care Model Policy for LSDs.

The Society partner with media, NGOs, human rights groups to effectively Advocate for Governments to take responsibility. The need for patients to advocate and lobby with the Central and State Governments for assistance is now  inevitable. Who better to tell their story than the people who are suffering and living it?

Aims and Objectives

  • To advocate with the central and state governments and other stakeholders to establish a sustainable health care model for all LSD patients in India
  • Convince the governments to promote early and accurate diagnosis and screening programs for these diseases
  • Help all treatable LSD patients to get proper treatment in time
  • Share their experiences to create a strong public voice on the issue
  • Ideating for best supportive care and optimum patient outcomes. This would include, but not be limited to, development of mechanisms for rehabilitation, counseling, capacity building and fund raising amongst others activities.


 [ Download Brochure ]

 

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