Rare Disease Day aims to raise awareness with policymakers and the general public about rare diseases and their impact on the lives of the 300 million persons living with a rare disease (PLWRD) worldwide.
These individuals and their families experience vulnerability and are disproportionally affected by stigma, discrimination, and marginalization in all aspects of their lives.
For them, knowledge and information are scarce, and expertise is not accessible. All of this leads to specific challenges in access to education, healthcare, employment, and leisure, and causes increased impoverishment and isolation.
On top of that, the COVID-19 pandemic has worsened these socio-economic challenges.
Therefore, PLWRD requires immediate and urgent attention, under the auspices of innovative global, regional, and national policies that address their needs, respect their human rights, and lead to more inclusive, sustainable societies in line with the UN Agenda 2030 and the Sustainable Development Goals.
Celebrating Rare Disease Day 2022 is dedicated and perfectly aligned with the vision of the NGO Committee and its partners of moving towards equity, inclusion, and social justice for PLWRD and their families.
Published : 15-Feb-2022