Where We Want to Be
Each bar shows our progress today toward our 2027 target.
10,000
Families to Support
All 28
States to Reach
500+
Specialist Doctors
₹10 Cr
Annual Impact Fund
50+
LSD Conditions
25,000
Community Members
Why This Work Cannot Wait
Only
30%
of LSD patients ever reach a specialist
Late or missed diagnosis is the biggest killer in rare diseases. Early access to counseling and specialists can extend quality of life by decades.
Up to
₹80L
per year for enzyme replacement therapy
These treatments are among the most expensive in medicine. Financial support is not a luxury — it is a matter of survival for most families.
Zero
mandatory newborn LSD screening programmes in India
Early detection through newborn screening can prevent irreversible damage. We are working to change this policy nationwide.
Five Initiatives That Will Change Rare Disease Care in India
Pan-India Genetic Counseling Network
AwarenessWe plan to build a nationwide network of trained genetic counselors in every state, making first-response support available in local languages within 24 hours of diagnosis.
Counselors in all 28 states by 2027
Support in 14 regional languages
< 2-hour response time on WhatsApp helpline
Zero-Cost Patient Travel Programme
AccessNo family should miss life-saving treatment due to travel costs. We aim to fund 2,000+ patient journeys annually, partnering with airlines, railways, and hospitals for end-to-end support.
2,000+ patient journeys funded annually
Partnerships with 20 specialist hospitals
Accommodation support in 10 metro cities
India's First LSD Diagnostic Hub
ResearchWe are working toward establishing a dedicated low-cost diagnostic centre for Lysosomal Storage Disorders — making accurate enzyme assay testing accessible beyond the 4 major metros.
Hub operational in Bengaluru by 2026
Low-cost newborn screening programme
Open-access rare disease biobank contribution
National Policy Reform Campaign
PolicyWe will push for inclusion of all LSD treatments under the Rashtriya Arogya Nidhi scheme, mandatory newborn screening, and a dedicated Rare Disease Cell within the Ministry of Health.
All LSD therapies included in NPRD funding
Mandatory newborn LSD screening in 5 states
Rare Disease Parliamentary Caucus formation
Caregiver Wellbeing & Training
CommunityCaregivers are the backbone of rare disease families and often suffer in silence. We plan certified caregiver training programs, mental health support, and a dedicated caregiver stipend for full-time caregivers.
5,000 caregivers trained & certified
Free mental health support for 1,000 families
Caregiver stipend pilot in 3 states
How Every Rupee Will Be Used
Planned allocation · Audited annually
Accounts audited annually by an independent CA firm. All reports are publicly available on our website.
Make a Difference
Help Us Build This Future
Our goals are ambitious because the need is urgent. Your donation — of any size — directly funds the initiatives on this page.