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United Nations

Explanation of Position: Resolution on Addressing the challenges of persons living with a rare disease and their families, 13 November 2023

Statement by: Emily Buist-Catherwood, First Secretary, New Zealand Permanent Mission to the United Nations 
As delivered

Thank you Chair.

I have the honour of speaking today on behalf of Australia, Canada, Iceland, Liechtenstein, Norway, and my own country, New Zealand.

We would like to thank Spain, Brazil, and Qatar for their work in facilitating this resolution.

We welcome the recognition in the text of the important role that civil society organisations play, including their work and dedication to raising awareness of the challenges experienced by persons living with a rare disease.

We also welcome the focus on highlighting the importance of implementing measures to address barriers faced by these persons, and the promotion of international mechanisms to further promote and protect human rights.

We would have liked to see strengthened language in this resolution, particularly recognition of the multiple and intersecting forms of discrimination faced by persons with disabilities, including those living with a rare disease.

Under the Convention on the Rights of Persons with Disabilities, States Parties have an obligation to ensure that persons with disabilities enjoy all human rights on an equal basis to everyone else.

We believe that meaningful implementation of the Convention should be for all persons with disabilities to ensure a fully inclusive society. We would have liked to see additional language in this resolution consistent with the intent and spirit of the Convention.

It remains our firm view that a human rights-based and gender-responsive approach is essential to addressing barriers to accessibility, and to ensuring full, effective and meaningful participation in all areas of life.

Thank you.

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