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Why Become our Member?

To improve the lives of Indian patients suffering from Lysosomal Storage Disorders (LSDs) such as Gaucher Disease, Pompe Disease, Fabry Disease, and Mucopolysaccharidosis (MPS), LSDSS has undertaken various initiatives as described below.

Treatment Assistance

LSDSS has been successful in getting state-sponsored treatment through court intervention for several patients in states like Kerala, Karnataka and Tamil Nadu. LSDSS can also explore treatment availability through humanitarian aid programmes of pharmaceutical companies.

Patient Advocacy

Since 2010, LSDSS has been constantly striving with the Central and State governments to resolve various challenges faced by LSD patients in India. Because of its unwavering efforts, LSDSS has been able to achieve major successes such as notification of the National Policy for Rare Diseases by the Government of India and cancellation of GST on treatment imported through humanitarian aid.

Peer Support

Living with a rare disease can be an isolating experience. We can help you connect with other LSD patients/caregivers across India so you can exchange experiences with others in the same situation.

Public Awareness

LSDSS was the first organization to commemorate the International Rare Disease Day in India in 2010. Since then, we have been raising awareness about various LSDs by organizing the Rare Disease Day as well as disease-specific awareness days like Gaucher day, Pompe day, MPS day, and Fabry day every year.

Media Awareness

We also undertake media awareness campaigns across India to increase awareness among the policymakers and key stakeholders about the various challenges faced by rare disease and LSD patients through print and digital media.

Continuing Medical Education

We undertake Continuing Medical Education (CME) initiatives for healthcare professionals in India to familiarize them and improve their knowledge about Lysosomal Storage Disorders in order to achieve improved diagnosis and management of LSDs.

Educational Materials

We can provide educational and information materials about various LSDs, such as disease-specific booklets, to help you better understand the disease and learn the dos and don'ts with regards to disease management, and can also guide you to other useful resources.

Access to experts and/or clinical trials

We are associated with the most renowned and expert geneticists in India and worldwide and can help you get your health evaluated by them during events like health camps during the Rare Disease Day. We can also provide information about any clinical trials for your disease ongoing or planned in India.

Supportive Care

We can provide supportive and rehabilitative care and also provide guidance and counselling to patients and families regarding various psychosocial and practical aspects like everyday life challenges, disease management, rehabilitation, and fundraising for treatment.

Become a Member

Complete the form below to become a member of the LSDSS and get support, guidance and counselling about your condition, as well as network with other LSD patients and families in India!

Your name *

First

Last

Your relation with patient *

Your email address *

Confirm Email

Your mobile number *

Patient's gender *

Patient's name *

First

Last

Patient's date of birth *

State *

Patient's address *

Address Line 1

City

State / Province / Region

Postal Code

Patient's disease *

Disease sub-type *

If Other, please specify name of disease *

Is patient on treatment? *

Would you like to register with the International Gaucher Alliance (IGA) to explore the possibility of treatment through humanitarian aid? *

The LSDSS is a member of the IGA, which is a UK-based international charity for Gaucher patients. The IGA maintains a database of Gaucher patients in need of treatment worldwide and works with pharmaceutical companies to explore the possibility of treatment through humanitarian aid programmes.

Would you like to register with ImpactGuru to raise funds for treatment through crowdfunding? *

The LSDSS has partnered with ImpactGuru, a leading crowdfunding company in India, to help LSD patients raise funds for treatment through crowdfunding.

Name of doctor *

Doctor's email address

Doctor's mobile number

Name of doctor's hospital *

City/town where the hospital is located *

How did you hear about the LSDSS? *

If Other, please specify. *

Consent to Data Storage by LSDSS *

I confirm that the above details are true to the best of my knowledge. I also permit LSDSS to store the information provided in this form for future communication.

Consent to Data-sharing with IGA *

Since I have requested for humanitarian aid from the International Gaucher Alliance (IGA), I hereby permit the LSDSS to share the information provided by me in this form with the IGA. I understand that the IGA will process the information as per its Privacy Policy available at https://gaucheralliance.org/privacy. Furthermore, I permit the IGA to share the information provided in this form with other parties and stakeholders who may be able to help with my situation.

Consent to Data-sharing with ImpactGuru *

Since I have opted to register with ImpactGuru to raise funds for treatment through crowdfunding, I hereby permit the LSDSS to share the details in this form with ImpactGuru and also permit ImpactGuru to contact me. I understand that ImpactGuru will process the data as per its Privacy Policy available at https://www.impactguru.com/privacy-policy.

Consent to IGA Age Disclaimer *

If the patient is 16 years of age or under, I hereby confirm that I am the parent or legal guardian of the patient named in this form, and I hereby permit the IGA on the patient’s behalf to process the information in this form to advocate for treatment.

Consent to IGA Treatment Availability Disclaimer *

I understand that registering for humanitarian aid with the IGA does not guarantee treatment. Humanitarian aid is subject to treatment availability and approval by the pharmaceutical companies.

Why Become our Member?

Treatment Assistance

Patient Advocacy

Peer Support

Public Awareness

Media Awareness

Continuing Medical Education

Educational Materials

Access to experts and/or clinical trials

Supportive Care

Become a Member

Contact Us

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