Organization for Rare Diseases India

What Organization for Rare Diseases India does

Organization for Rare Diseases India (ORDI) is a Section 25 non-profit company, founded in February 2014 and headquartered in Bangalore, that operates as the national umbrella advocacy body for the estimated 70 million rare disease patients in India. Its functional activities are organized around three pillars: (1) patient support and treatment facilitation, delivered through a +91 8892-555-000 helpline that has handled 11,500+ calls, a network of Rare Disease Care Coordination Centres (RDCCC) co-located with government and tertiary hospitals in Karnataka, Kerala, Tamil Nadu, Telangana, and Delhi (AIIMS), and a 32-member Pan India Patient Advocacy Group (PAG) network; (2) awareness and education, executed through the annual Race for 7 mass event (40,300 participants), 160+ webinars with 6,500+ participants, Rare Star Awards, and an E-Library of Rare Info Series and Rare Talks; and (3) policy advocacy, evidenced by 2,084 interactions with policymakers and direct participation in the National Policy for Rare Diseases 2021 and state-level rare disease policy formulation (most recently Andhra Pradesh, June 2026).

ORDI's operating model is donor-funded rather than commercial. Revenue is sourced from tax-deductible individual donations (Section 80G of the Indian Income Tax Act, donations above Rs 500 qualifying) and from CSR grants provided by large pharmaceutical companies including Sanofi, Novo Nordisk, Takeda, Roche, AstraZeneca, Merck, Medgenome, and Laurus, plus smaller supporters ElevenX and Pharmed. The organization is led by Co-Founder and Executive Director Prasanna Shirol and Co-Founder Dr. Harsha Rajasimha, with CEO Madhan Gopal, Founder Member Dr. Vijay Chandru, and Scientific Advisor Dr. Sudheendra Rao N R, supported by 17 paid staff and 410 volunteers. Strategic international alliances with NORD, EURORDIS, RDI, Global Gene, UDN, and a partnership with AIIMS Delhi anchor its institutional reach. As a non-profit, ORDI does not sell a product; its 'technology' is a patient advocacy platform with helpline infrastructure and disease-registry connections, and its pricing is effectively the donation model described above.

Name

Organization for Rare Diseases India

Legal name

Organization for Rare Diseases India

Website

https://ordindia.in

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

11–50 employees

Short description

Organization for Rare Diseases India (ORDI) is a Bangalore-based non-profit founded in 2014 that serves as the national umbrella advocacy body for rare disease patients in India, providing helpline support, treatment facilitation, awareness campaigns, and policy advocacy through a 32-member patient advocacy group network.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190), Social Assistance (624)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease advocacy
• Patient support services
• Nonprofit health organization
• Patient helpline services
• Rare disease awareness

Headquarters

HQ city

Bangalore

HQ country

India

HQ region

Asia

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure

Revenue model

1. Donations and CSR Funding: ORDI generates revenue through public donations (tax-exempt under Section 80G of Income Tax Act) and CSR funding from pharmaceutical companies including Sanofi, Novo Nordisk, Medgenome, Laurus, Merck, Takeda, Roche, and AstraZeneca.

Pricing tiers

Go-to-market motion2 records

Distribution channels3 records

Marketing channels7 records

Core offering

ORDI is a national umbrella Section 25 non-profit organization that represents the collective voice of rare disease patients in India. It delivers patient advocacy, treatment facilitation, awareness campaigns (Race for 7), and operates a pan-India network of Rare Disease Care Centers (RDCCC) along with a multilingual patient helpline, serving patients, families, healthcare providers, and policymakers.

Product overview

Organization for Rare Diseases India (ORDI) is a national non-profit organization (Section 25 company) that serves as the collective voice for rare disease patients in India. Rather than offering a traditional product, ORDI provides advocacy services, patient support programs, and awareness initiatives including the Rare Star Awards recognition program, Race for 7 awareness campaign, iCare4Rare initiative, and an E-Library containing Rare Info Series, Rare Talks, and Webinar Series content. ORDI also facilitates Rare Disease Care Centers (RDCCC) across multiple Indian states and operates a patient helpline.

Differentiator

Problem solved

Functional benefit

Brands

• iCare4Rare: A program/initiative by ORDI focused on rare disease care
• Race for 7
• Rare Star Awards

Products and services

• Patient Helpline Service Direct phone-based helpline (+91 8892 555 000) providing information, counseling, treatment guidance, and referrals to rare disease patients and their families across India. Has handled over 11,500 calls.
• Rare Disease Care Centers (RDCCC) Network A network of Rare Disease Care Coordination Centers established in partnership with government and private hospitals across Karnataka (IGICH Bengaluru, Baptist Hospital, JSS Mysore, ARK St. John's), Kerala, Tamil Nadu (Egmore), Telangana, and Delhi (AIIMS) to coordinate treatment and patient care.
• Rare Star Awards Annual recognition program (2024, 2025, 2026 editions) honoring contributions to rare disease advocacy, patient care, and awareness by individuals, organizations, and supporters of the rare disease community in India.
• Race for 7 Awareness Campaign Annual 7-kilometer mass awareness run representing 7,000 rare diseases, conducted simultaneously across multiple Indian cities with participation exceeding 40,300 cumulative participants.
• iCare4Rare Program An ORDI initiative focused on direct care and support for rare disease patients, complementing the broader advocacy and awareness activities of the organization.

Quantifiable outcome

• Treatment facilitated to 372 patients worth Rs 284 Crores
• +3 more outcomes

Named customers2 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

18 partnerships are on record, tiered core and minor.

• SanoficoreGTM or Marketing PartnerPharmaceutical company providing CSR support to ORDI for rare disease patient advocacy and awareness programs in India.
• Novo NordiskcoreGTM or Marketing PartnerPharmaceutical company providing CSR funding to support ORDI's rare disease initiatives and patient support programs.
• TakedacoreGTM or Marketing PartnerPharmaceutical company supporting ORDI's rare disease advocacy through CSR partnerships.
• RochecoreGTM or Marketing PartnerPharmaceutical company providing CSR support for rare disease patient advocacy programs.
• AstraZenecacoreGTM or Marketing PartnerPharmaceutical company supporting ORDI through corporate social responsibility initiatives.
• MerckcoreGTM or Marketing PartnerPharmaceutical company providing CSR support to ORDI for rare disease awareness and patient support.
• MedgenomecoreGTM or Marketing PartnerGenomics company supporting ORDI's rare disease initiatives through CSR funding.
• LauruscoreGTM or Marketing PartnerPharmaceutical company providing CSR support for rare disease patient advocacy programs.
• ElevenXminorGTM or Marketing PartnerCSR supporter of ORDI's rare disease initiatives.
• PharmedminorGTM or Marketing PartnerCSR supporter of ORDI's rare disease initiatives.
• AIIMS (All India Institute of Medical Sciences), DelhicoreStrategic or Co-development PartnerORDI has established a partnership with AIIMS Delhi to transform rare disease patient support. This partnership aims to improve access to treatment and care for rare disease patients through the government healthcare system.
• NORD (National Organization for Rare Disorders)coreStrategic or Co-development PartnerInternational collaboration with US-based NORD for rare disease advocacy, sharing best practices, and connecting Indian patients with global resources.
• EURORDIS (Rare Diseases Europe)coreStrategic or Co-development PartnerEuropean rare disease alliance partnership for advocacy collaboration and policy development.
• RDI (Rare Diseases International)coreStrategic or Co-development PartnerGlobal rare disease advocacy alliance connecting organizations worldwide for collaborative advocacy.
• GlobalGenecoreStrategic or Co-development PartnerInternational collaboration for genetic research and rare disease advocacy.
• UDN (Undiagnosed Diseases Network)coreStrategic or Co-development PartnerPartnership with Undiagnosed Diseases Network for improving diagnosis of rare and undiagnosed diseases.
• ICMR (Indian Council of Medical Research)coreStrategic or Co-development PartnerGovernment body operating the Rare Disease Patient Registry, a key component of India's rare disease ecosystem.
• George Mason UniversityminorStrategic or Co-development PartnerUS research university collaboration for rare disease research. ORDI and George Mason University had an exhibit table at NIH Rare Disease Day Event in 2017.

Scale indicators12 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• National Organization for Rare Disorders (NORD): US national umbrella patient advocacy organization for rare diseases. Directly comparable to ORDI in mission, federal-policy focus, patient support programs, and rare-disease registry/awareness model, though operating at much greater scale in the US.
• EveryLife Foundation for Rare Diseases: US rare disease policy advocacy organization focused on accelerating equitable access to therapies. Highly comparable to ORDI's policy advocacy and treatment-access orientation, especially around newborn screening and Centers of Excellence-style infrastructure.
• EURORDIS - Rare Diseases Europe: European alliance of over 1,000 rare disease patient organizations across 70+ countries. Closest functional analog to ORDI as a multi-country umbrella that drives rare disease policy, EURORDIS collaborations, and patient-centered advocacy frameworks that ORDI explicitly models itself on.
• Global Genes: US-based rare disease advocacy organization focused on awareness, patient empowerment, and tools like the RARE Foundation Toolkit. Comparable mission and program mix to ORDI's Race for 7, Rare Star Awards, and webinar series, but operating in the US market.
• Orphanet: European-hosted reference portal and database for rare diseases and orphan drugs. Comparable to ORDI's disease registry and information infrastructure goals; provides a useful benchmark for how ORDI's ICMR-linked registry could scale into a national knowledge backbone.
• Canadian Organization for Rare Disorders (CORD): Canada's national network of organizations representing rare disease patients. Directly comparable umbrella advocacy model that pushes federal rare disease policy, access to therapies, and patient registries — similar role to ORDI within the Canadian context.
• Lysosomal Storage Disorders Support Society (LSDSS): India-based patient support society for lysosomal storage disorders and a long-standing ORDI partner in the rare disease ecosystem. Comparable as a disease-specific advocacy organization operating within the same patient population and policy environment as ORDI.
• Rare Diseases International (RDI): Global alliance connecting national rare disease federations worldwide. ORDI is an active partner; RDI is comparable as a network-of-networks advocacy body coordinating cross-border rare disease policy work at the UN and WHO.

Broad incumbents

• Genetic Alliance: Established US health advocacy organization with a broader mandate across genetic conditions, including rare diseases. Overlaps with ORDI on patient advocacy and rare disease support, but covers a wider genetic-condition scope and runs programs like newborn screening that intersect with ORDI's registry work.

Regional players

• Rare Voices Australia: Australia's national rare disease advocacy alliance and the country's recognized peak body on rare diseases. Highly comparable strategic advocacy and policy engagement model, but operating exclusively in the Australian market rather than India.

Market position

Strengths1 record

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/ord-india

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Organization for Rare Diseases India