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Rare Diseases Q1 2021

Making rare diseases a human rights priority

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Flaminia Macchia

RDI Executive Director, Rare Diseases International

The global rare disease community urges UN Member States for a UN Resolution to recognise rare diseases as an international policy priority and promote measures to protect the human rights of all people, including those of PLWRD.

Over 300 million people worldwide live with one of the 6,000-8,000 identified rare diseases. Rare diseases are often chronic, multi-systemic, disabling and life-threatening. People living with rare diseases (PLWRD) are confronted with a lack of public awareness, as well as limited expertise, knowledge, and resources available. Consequently, this community is exposed to greater social, health and economic vulnerability.

Putting rare diseases on human rights agenda

Addressing the needs of PLWRD and their families is a human rights issue. Throughout the course of a lifetime with a rare disease, individuals experience specific challenges in accessing healthcare, education, employment and leisure, impeding their full participation and inclusion in society.

Other challenges are linked to childhood, gender, vulnerability and poverty-related issues. Therefore, the community calls for an inclusive approach that recognises the challenges of PLWRD as a priority within the international human rights agenda.

People living with rare diseases (PLWRD) are confronted with a lack of public awareness, as well as limited expertise, knowledge, and resources available.

Ensuring no one is left behind

In addition, full recognition of the over 300 million people living with a rare disease is an important advancement towards the UN Sustainable Development Goals. To deliver on the commitment to “leave no-one behind” by reaching the most vulnerable in society, the UN is asked to be inclusive of the rare disease community.

Rare Disease International (RDI) is engaged in the elaboration of a draft resolution which is co-authored with rare disease patient organisations active in over 100 countries. These include regional organisations for Europe, Asia-Pacific and Ibero-America and national alliances from six continents. It brings attention to the shared challenges of all PLWRD, the need to develop national strategies, and to include this priority in the programmes and agencies of the UN system.

In 2019, coordinated advocacy from the international community resulted in the inclusion of rare diseases in the landmark UN Political Declaration on Universal Health Coverage. RDI also leads a collaboration with the World Health Organization for the development of a global network to improve care for PLWRD, regardless of where they live.

To mark Rare Disease Day 2021, RDI and its partners will host a policy event on 4 March 2021. The event kicks off a global campaign in support of the first UNGA Resolution for PLWRD. We invite the public to join the call for a UN Resolution and contribute to this milestone for persons and families living with a rare disease.

Click here to register for the event.

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