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Rare Diseases Q3 2022

Transforming care for rare diseases around the world

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Flaminia Macchia

Executive Director, RDI

History was made at the United Nations (UN) with the adoption of a General Assembly Resolution on “persons living with a rare disease and their families.

Advocating for the right to health 

Civil society groups are now turning their attention to how this groundbreaking text can help transform care for rare diseases. In recent years, Persons Living with a Rare Disease (PLWRD) have gone from being near invisible to the UN and international institutions to gaining increased recognition as a vulnerable population requiring attention. This transition is reflected in the UN resolution, which was adopted by consensus by all UN member states last year, as well as the inclusion of rare diseases in the UN political declaration on Universal Health Coverage (UHC).

However, without specific policy frameworks and support, health systems and governments are unable to implement international commitments. Over 300 million PLWRD worldwide cannot fully realise the right to health and experience significant difficulties receiving a diagnosis and accessing treatment, services, and appropriate care.

Universal Health Coverage for rare diseases

Rare disease groups, led by Rare Diseases International (RDI), are working together toward the implementation of the UN resolution. They are currently advocating for the integration of rare diseases in national and international policies aimed at achieving Universal Health Coverage and strengthening health systems. 

We need specific frameworks and actions to advance UHC to prioritise rare diseases. The community’s message to policymakers is that Universal Health Coverage cannot be achieved unless and until health systems address the needs of Persons Living with a Rare Disease.

We need specific frameworks and actions to advance UHC to prioritise rare diseases.

Connecting experts globally

At the margins of the World Health Assembly in May, World Health Organization (WHO) Director of Health Promotion Rüdiger Krech announced the launch of a collaboration with RDI toward the establishment of a global network of expertise to collaborate on rare diseases. 

The network, which is in the development stage, would link centres of excellence, clinics, and experts around the world and pool resources to enhance the accessibility and quality of diagnosis and care.

The WHO representative said the network’s vision would be to ensure people are diagnosed earlier and medical professionals receive proper counselling and advice through global support in order to improve care for PLWRD.

Toward a WHO Resolution

Together with the development of the network, RDI is advocating for a WHO Resolution on Universal Health Coverage for rare diseases to ensure all people, regardless of where they live, have access to timely diagnosis and care.

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