The Indian Allaince of Patients Groups (IAPG) has been created to represent patient organisations across disease areas. It stands for all patients, working to support their cause, highlight their needs and allow them a voice. IAPG brings attention to chronic Non-Communicable Disease (NCD) as well as rare and neglected diseases and believes that patient must be at the centre of the healthcare conversation.
The patient movement in India has shown some initial success and is poised to move forward with support from the National Health Mission (NHM), which includes among its objectives: "protection of patient's rights that guarantee appropriateness of care, patient choice, portability and and continuity of care". The high level Expert Group on Universal Health Coverage recommends that we "ensure strong linkages and synergies between management and regulatory reforms and and ensure accountability to patients and communities". The Government of India, through the National Rural Health Mission (NRHM), has RogiKalyanSamities and Hospital Management Committies (HMCs), where patient representatives inform the functioning of hospitals at district and sub-district levels. The HIV movement, with its large network, has been a success story - bringing patient voices to the policy platform..
IAPG remains an active member of the rare diseases and orphan drugs movement in India and has participated actively in several related forums. It was represented at the inaugural Asia Pacific Association of Rare Disease Organisations (APARDO) meeting in Singapore, May 2015, as well as its Annual General Meeting, March 2016. Through DakshamA Health, IAPG is present as a member in APARDO and Advisor in Indian Organization of Rare Diseases (I-ORD). A consensus document on the principles of collaboration between the regional organization and Rare Disease International (RDI) was drafted jointly, to agree that rare diseases would recieve the priority they deserve and this will be represented strongly in all forums.
We consider working to universal access to safe and quality healthcare with dignity as our vision. And working to promote and facilitate patients engagement with healthcare providers and policy makers as our mission.