25 Aug 2026 (Navroze Bureau) : India’s experience with Amul’s cooperative model could offer useful lessons for improving support and access to care for people living with rare diseases.
The central idea is to build a system in which patients and families are not treated as isolated beneficiaries but become part of a wider, coordinated network involving healthcare providers, researchers, organisations and policymakers.
What Amul’s Model Teaches
Amul’s success was built around cooperation, local participation and professional management. The cooperative approach gave producers a collective platform while connecting them to processing, marketing and distribution systems.
A similar principle could be considered in rare-disease care: bringing fragmented patient groups together could give families a stronger voice in research, treatment access and policy discussions.
Rare Diseases Face Unique Challenges
People living with rare diseases often face difficulties that go beyond the medical diagnosis.
These can include delayed diagnosis, limited availability of specialists, high treatment costs, inadequate awareness and difficulty accessing appropriate medicines. Patient organisations can play an important role in helping families navigate these challenges.
Research on rare-disease management has also highlighted the importance of patient organisations and grassroots networks in improving support and coordination.
Building Patient-Led Networks
One lesson from the cooperative model is the value of collective action.
Rare-disease communities could strengthen networks that bring together patients with the same or related conditions. Such networks can help collect patient experiences, connect families with specialists and create a stronger platform for advocacy.
Patient groups can also contribute valuable information to researchers about symptoms, treatment experiences and unmet needs.
Data Could Make a Difference
A coordinated system could also help address one of the biggest challenges in rare diseases: small and scattered patient populations.
Better patient registries and secure data-sharing systems could help researchers identify eligible participants for clinical studies, understand disease progression and evaluate potential treatments.
At the same time, patient information would need strong privacy safeguards and appropriate consent mechanisms.
From Producers to Patients
Amul demonstrated how a large network can connect individuals at the grassroots level with professional systems operating at scale.
For rare diseases, the equivalent could be a network connecting patients, hospitals, laboratories, researchers, pharmaceutical companies and government agencies.
Such coordination could reduce duplication and make it easier to identify gaps in diagnosis, treatment and long-term care.
Making Treatments More Accessible
Rare-disease therapies can be extremely expensive because research and development costs are spread across relatively small patient populations.
A stronger ecosystem could encourage collaboration among researchers, industry, government and patient organisations to explore ways of making diagnosis and treatment more affordable.
This could include shared research infrastructure, patient registries, public-private partnerships and stronger domestic capabilities.
Patients Should Have a Greater Voice
Another important lesson is participation.
Patients and caregivers have direct experience of the challenges created by rare diseases. Giving them a meaningful role in research priorities, healthcare planning and policy discussions could help ensure that programmes address real-world needs.
Technology Can Connect the Ecosystem
Digital platforms could help connect rare-disease patients with specialists, support groups and research programmes across India.
Telemedicine, electronic registries and secure data systems could be particularly useful for families who live far from specialised treatment centres.
The Model Needs to Be Adapted
Amul’s cooperative structure cannot simply be copied into healthcare.
Rare diseases involve complex medical, ethical, regulatory and financial issues. Any patient-centred model would need strong clinical oversight, privacy protections and transparent governance.
The useful lesson is therefore not the exact structure, but the principle of collective organisation backed by professional systems.
A More Connected Future for Rare-Disease Care
India’s rare-disease community could benefit from a more coordinated approach in which patients are connected rather than isolated.
Taking inspiration from the cooperative principles behind Amul could help create stronger patient networks, better data systems and more collaborative research—potentially making rare-disease care more accessible and patient-focused.