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To: Minister of Health

UN General Assembly Resolution on Addressing the Challenges of Persons Living with a Rare Disease

The overarching goal of the campaign is to recognise that PLWRD are an overlooked population
requiring immediate and urgent attention, and global and national policies that address their
needs and contribute to achieving the UN 2030 Agenda, the Sustainable Development Goals and
their pledge to ‘leave no one behind’.

Why is this important?

The 300 million PLWRD around the world and their families face common challenges in all
aspects of their daily lives. As a population with increasing vulnerabilities, they are
disproportionally affected by stigma, discrimination and social marginalization, within their
social environment and in society at large. The paucity of knowledge and expertise on rare
diseases and the lack of awareness of the challenges faced by PLWRD mean that they are
psychologically, socially, culturally and economically vulnerable.
b) There are a number of synergies between the rare disease community’s needs and goals, and
those of the UN 2030 Agenda and its Sustainable Development Goals1


2021-06-16 18:29:21 +0100

25 signatures reached

2021-06-15 12:50:32 +0100

The specific combination of vulnerability, inequality, and exclusion experienced by persons living with a rare disease and their families make it necessary to integrate measures to address rare diseases in the broader human rights agenda.

In addition, a UN Resolution on PLWRD is essential to the realisation of the United Nations’ pledge to “leave no-one behind” as expressed in the Sustainable Development Goals 2030.

A growing group of UN Member States including Brazil, Spain and Qatar, are championing the call for the adoption of the UN General Assembly Resolution in 2021. We are calling on all 193 Member States of the UN General Assembly to join the call, and adopt the UN Resolution this year.

2021-06-15 12:32:07 +0100

10 signatures reached