To date, the empowerment and involvement of PLWNCDs and young people has been broadly neglected. Currently the knowledge of PLWNCDs is undervalued in NCD programme development, implementation and policy-making, and in general PLWNCDs are under-represented as leaders in organisations and are largely silent in decision-making processes. This situation must be corrected in order to realise the rights and responsibilities of people living with NCDs, which require supportive political, legal, and social environments that give all people the opportunity to speak up, especially those most vulnerable and disenfranchised.

Through close connection with communities, civil society organisations (CSOs) provide people affected by NCDs with an essential voice in decision-making processes. CSOs raise public demand and engage with and apply concerted pressure on governments to ensure that resources and services reach and benefit affected communities, as well as hold governments and other sectors to account. Investing in civil society should be recognised as part of the global public goods agenda.