Orphan diseases
Our approach to research and practice in health and health policy is interdisciplinary, participative and democratic. We favour collaborative research and co-design methods and tools.
Our interdisciplinary team of design research, humanities and social science researchers collaborate and apply rich insights gleaned from in-depth research while evaluating and reframing existing health systems, policies and practices and also in co-designing patient-driven policies and practices in the health sector.
We use engaging, innovative and culturally appropriate methods and tools to disseminate information on public health policies.
Our goal is to improve the quality of and access to the public health facilities and programmes in India for all.
List of Orphan diseases
List of Hematological Disorders
You will be taken to the website OPFORD.org.
Managing Orphan Diseases
An orphan or a ‘rare disease’ affects a small percentage of the population and are usually genetic. We are committed to making Orphan disease treatments available and accessible to all those who need it.
Our goal is to improve the quality of and access to the public health facilities and programmes in India for all.
Our health humanities specialists closely work with clinicians, patient communities and caregivers to facilitate better communication and meaningful connections towards empowering patients and caregivers.
As stakeholder participation is critical in the co-design of patient driven public health policies that foster the right to health for all, we work closely and collaboratively with women, children, people with chronic/rare diseases, caregivers, care providers, insurance and state agencies and other key stakeholders in policy evaluation and formulation.
Our bioethicists and instructional design team work closely with healthcare practitioners, educators and patient communities in co-designing and implementing CMEs that inform and sensitize doctors and other healthcare providers.