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Register with LSDSS

Registering is free and takes about 10 minutes. Tell us about the patient, and we can guide you on diagnosis, treatment and financial support, and connect you with other families living with a lysosomal storage disorder.

What happens next

Fill in the form

Share details about the patient, their diagnosis and their doctor.

Check your email

You will get an email from LSDSS with more information, your next steps and an invitation to join our WhatsApp group. If it does not arrive within a few minutes, check your spam folder.

Ask us anything

Reply to the email or contact us if you have questions about treatment, support or connecting with other families.

Why register with LSDSS?

Since 2010, LSDSS has supported families across India living with lysosomal storage disorders, and 360+ families from 27 states and union territories have registered with us online. When you register, we can help you with:

Treatment guidance

Help finding a Centre of Excellence, applying for support under the National Policy for Rare Diseases, and raising funds for treatment through our crowdfunding partner, ImpactGuru.

Clinical trials

News of clinical trials relevant to your condition, through our links with companies developing new treatments for LSDs.

Peer support

Connect with other patients and families who understand what you are going through, and share experiences, tips and support. Registered families are invited to join our WhatsApp group.

Information and resources

Reliable information about LSDs, and help finding specialists and Centres of Excellence near you.

Counselling and practical help

Guidance on everyday challenges, disease management, rehabilitation and fundraising for treatment.

A stronger voice

Every registration strengthens our advocacy with the central and state governments for better diagnosis, treatment and care.

Our record: LSDSS has helped secure state-funded treatment through the courts in Kerala, Karnataka and Tamil Nadu, free treatment through ESIC for eligible families, and an IGST exemption on life-saving LSD medicines received through charitable programmes. Read about our journey.

Registration form

Tell us about the patient

Fields marked * are required. If you are registering on behalf of someone else, choose your relationship to them and we will ask for the patient’s details.

Before you start, have ready

Your privacy

LSDSS uses your details only to support you, and asks for your consent on the form. We share them with ImpactGuru only if you ask us to. You can ask us to delete them at any time. Read our privacy policy.

Patient Registration

Your name

Your relation with patient

Your email address

Confirm your email address

Your mobile number

Patient's gender

Patient's name

Patient's date of birth

State

Patient's address

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?

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

Name of doctor

Doctor's email address

Doctor's mobile number

Name of hospital

City/town where the hospital is located

How did you hear about the LSDSS?

If Other, please specify.

How we use your details

LSDSS uses the details in this form, including the patient’s health details, only to contact you, support the patient, and produce anonymous statistics. Form emails go to the LSDSS team at contactus@lsdssindia.org. We share your details with ImpactGuru only if you tick the box asking us to. You can ask us to see, correct or delete them, or withdraw your consent, at any time.

Read our Privacy Policy.

Declaration

I confirm that the details above are correct to the best of my knowledge.

Your consent

I am the patient (aged 18 or over), or the patient’s parent or legal guardian, or I have their permission to register them. I agree that LSDSS may store and use the details in this form, including the patient’s health details, as explained above and in the Privacy Policy.

Consent to share with ImpactGuru

I want LSDSS to share my name, my relationship to the patient, my email address and mobile number, the patient’s disease, and the hospital’s name and city with ImpactGuru, so that ImpactGuru can contact me about crowdfunding for treatment. ImpactGuru will use them under its own Privacy Policy (impactguru.com/privacy-policy).

Questions about registering

Answers to common questions about registering with LSDSS.

Still have a question?

Who can register with LSDSS?

Anyone in India living with a lysosomal storage disorder can register, or a parent, relative or carer can register on their behalf.

Is registration free?

Yes. Registering with LSDSS is free of charge.

What happens after I register?

You will receive an email from LSDSS with more information and your next steps, such as visiting a Centre of Excellence and applying for government support, and an invitation to join the LSDSS India WhatsApp group. If it does not arrive within a few minutes, check your spam folder. You can reply to the email or contact us with any questions.

Why does the form ask about the International Gaucher Alliance and ImpactGuru?

For Gaucher disease, the International Gaucher Alliance (IGA) keeps a waiting list for charitable treatment. ImpactGuru is our crowdfunding partner for raising treatment funds. Both are optional: your details are shared with them only if you choose Yes and give your consent.

Is my information kept private?

LSDSS uses your details to support you, as explained in the form and in our privacy policy. They are shared with partners only if you choose to and give your consent.

I am having trouble with the form. What can I do?

Email us at contactus@lsdssindia.org or call +91 98100 22645, and we will help you register.