health

On the road towards COVID-19 recovery and delivery of the SDGs: Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority

Overview:

The 300 million persons living with a rare disease around the world and their families face common challenges in all aspects of their daily lives. As they experience different levels of vulnerability, they are disproportionally affected by stigma, discrimination and marginalization, within their own social environment and in society at large. Knowledge and information are scarce and expertise is not accessible. Stigma, discrimination, lack of awareness and recognition lead to specific challenges in access to education, healthcare, employment and leisure. The impact is felt throughout their lives, causing increased impoverishment and isolation for individuals and their families. These socioeconomic challenges have been worsened by the current Covid-19 pandemic and will not diminish post-COVID-19 unless specific attention is paid to them. In the context of the decade of action and delivery for sustainable development, it is critical to acknowledge how the specific challenges of persons living with a rare disease are at the heart of the 2030 Agenda and present many synergies with the Sustainable Development Goals (SDGs), including goals 1, 3, 8 and 10, which are under review at the High-Level Political Forum 2021. Persons living with a rare disease therefore require immediate and urgent attention, under the auspices of global and national policies that address their needs and respect their human rights. Indeed, unless persons living with a rare disease are explicitly included we cannot ensure that ‘no one is left behind.’

Objective of the event:

The side-event to the High Level Political Forum 2021 has the objective to showcase how addressing the challenges of persons living with a rare disease, recognizing their rights, needs and priorities, as well as promoting their active participation, and harnessing the opportunities for their inclusion in society is essential to the realisation of the 2030 Agenda and to the sustainable recovery from the COVID-19 pandemic. The rare disease civil society community (represented by the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS-Rare Diseases Europe) with the support of a number of UN Member States including Spain, Brazil and the State of Qatar, proposes to discuss, at the event, the adoption of a UN General Assembly Resolution that can act as a catalyst and provide a constructive and consensual intergovernmental vision on the issue.

Register here: us02web.zoom.us/webinar/register/WN_06nqC4E0S_ifw75SoKQDiw

Agenda: rarediseasesinternational.org/wp-content/uploads/2021/07/Final-Programme-UN-HLPF-Event.pdf

Concept Note: rarediseasesinternational.org/wp-content/uploads/2021/07/Concept-Note-HLPF-side-event-2021_Persons-rare-diseases_Final.pdf

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CoNGO Notes: For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org. For more information on the NGO Committee on Human Rights, please email the co-chairs at bobbinassar@gmail.com or bknotts@uua.org. For more information on the NGO Committee on Sustainable Development-NY, please visit ngocsd-ny.org. For more information on the NGO Committee on Sustainable Development-Vienna, please visit ngocsdvienna.org.

On the road towards COVID-19 recovery and delivery of the SDGs: Addressing the challenges of persons living with a rare disease as a human rights, sustainable development and equity priority

Overview:

The 300 million persons living with a rare disease around the world and their families face common challenges in all aspects of their daily lives. As they experience different levels of vulnerability, they are disproportionally affected by stigma, discrimination and marginalization, within their own social environment and in society at large. Knowledge and information are scarce and expertise is not accessible. Stigma, discrimination, lack of awareness and recognition lead to specific challenges in access to education, healthcare, employment and leisure. The impact is felt throughout their lives, causing increased impoverishment and isolation for individuals and their families. These socioeconomic challenges have been worsened by the current Covid-19 pandemic and will not diminish post-COVID-19 unless specific attention is paid to them. In the context of the decade of action and delivery for sustainable development, it is critical to acknowledge how the specific challenges of persons living with a rare disease are at the heart of the 2030 Agenda and present many synergies with the Sustainable Development Goals (SDGs), including goals 1, 3, 8 and 10, which are under review at the High-Level Political Forum 2021. Persons living with a rare disease therefore require immediate and urgent attention, under the auspices of global and national policies that address their needs and respect their human rights. Indeed, unless persons living with a rare disease are explicitly included we cannot ensure that ‘no one is left behind.’

Objective of the event:

The side-event to the High Level Political Forum 2021 has the objective to showcase how addressing the challenges of persons living with a rare disease, recognizing their rights, needs and priorities, as well as promoting their active participation, and harnessing the opportunities for their inclusion in society is essential to the realisation of the 2030 Agenda and to the sustainable recovery from the COVID-19 pandemic. The rare disease civil society community (represented by the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS-Rare Diseases Europe) with the support of a number of UN Member States including Spain, Brazil and the State of Qatar, proposes to discuss, at the event, the adoption of a UN General Assembly Resolution that can act as a catalyst and provide a constructive and consensual intergovernmental vision on the issue.

Register here: us02web.zoom.us/webinar/register/WN_06nqC4E0S_ifw75SoKQDiw

Agenda: rarediseasesinternational.org/wp-content/uploads/2021/07/Final-Programme-UN-HLPF-Event.pdf

Concept Note: rarediseasesinternational.org/wp-content/uploads/2021/07/Concept-Note-HLPF-side-event-2021_Persons-rare-diseases_Final.pdf

_____________________________________________________________________________________________

CoNGO Notes: For more information on the NGO Committee for Rare Diseases, please visit ngocommitteerarediseases.org. For more information on the NGO Committee on Human Rights, please email the co-chairs at bobbinassar@gmail.com or bknotts@uua.org. For more information on the NGO Committee on Sustainable Development-NY, please visit ngocsd-ny.org. For more information on the NGO Committee on Sustainable Development-Vienna, please visit ngocsdvienna.org.