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UN Resolution on Persons Living with a Rare Disease

This milestone is the outcome of coordinated and robust advocacy from rare disease civil society groups worldwide led by Rare Diseases International (RDI), the NGO Committee for Rare Diseases, … See more

Actived: 6 days ago

URL: https://www.rarediseasesinternational.org/un-resolution/

UN Member States include rare diseases in political declaration on

WEB23 September 2019, New York – Today at a high-level meeting at the United Nations (UN) headquarters, UN Member States adopted a political declaration on universal health …

Category:  Health Go Health

Operational Description of Rare Diseases

WEBThe Operational Description of Rare Diseases is composed of two elements: core definition. Defines what diseases are considered rare and how many persons are affected. …

Category:  Health Go Health

Universal health coverage

WEBAll UN Member States have agreed to work to achieve Universal Health Coverage by 2030 as part of the Sustainable Development Goals.. In 2019, countries adopted the UN …

Category:  Health Go Health

New scientific paper confirms 300 million people living with a rare

WEBA new scientific paper published in the European Journal of Human Genetics has confirmed that the number of people worldwide living with a rare disease is estimated at 300 …

Category:  Health Go Health

Global Network for rare diseases

WEBPersons Living with a Rare Disease (PLWRD) represent a large global population of over 300 million.. However, due to the low prevalence of each of the over 6000 rare diseases …

Category:  Health Go Health

The right to health – making rare diseases a global health priority

WEBAlmost 150 participants at the Rare Diseases International policy event ‘The Right to Health: The Rare Disease Perspective’ explored ways to address inequality and …

Category:  Health Go Health

Rare Diseases International Rare Diseases International

WEB2023. The UN adopt a new Political Declaration on “UHC expanding our ambition for health and well-being in a post-COVID world” with Rare Diseases included

Category:  Health Go Health

Resolution4Rare Toolkit

WEBMessages of support from UN Representatives and Governments (Brazil, Qatar, France, Thailand Spain) RDI Rare Disease Day Policy Event – Call for a UN Resolution, 4 March …

Category:  Health Go Health

#UHC4Rare toolkit

WEBThe Universal Health Coverage for Rare Diseases (#UHC4RareDiseases) Campaign aims to enable patient organisations and the public to advocate for Universal Health …

Category:  Health Go Health

World Health organization

WEBOur community’s engages with the World Health Organization (WHO) to raise awareness of rare diseases, encourage the development of international and national policies for …

Category:  Health Go Health

Agreement with the WHO

WEBIn December 2019, Rare Diseases International (RDI) signed a Memorandum of Understanding with the World Health Organization (WHO). The collaboration aims to …

Category:  Health Go Health

Health Equity & ACCESS

WEBHealth Equity & ACCESS. Persons Living with a Rare Disease (PLWRD) and their families must have an equal opportunity to achieve the highest possible level of physical, mental, …

Category:  Health Go Health

Inclusion & Human Rights

WEBKey Resources . RDI UHC Day Statement on Health Equity, 13 December 2021; Policy event ‘The Right to Health: The Rare Disease Perspective’ at Campus …

Category:  Health Go Health

Rare diseases feature for first time at World Health Assembly

WEB23 May 2019 marked a historic day for the rare diseases movement with rare diseases being featured on the agenda of the World Health Assembly (WHA) for the first time. …

Category:  Health Go Health

VISION & MISSION

WEBVISION & MISSION. The global alliance of Persons Living with a Rare Disease and their families across all countries and across all rare diseases. Throughout a lifetime, Persons …

Category:  Health Go Health

Rare Diseases: A GLobal Priority for Equity

WEBMeeting Report. Meeting Report – “Fourth High-Level meeting of the NGO Committee for Rare Diseases Celebrating the adoption of the UN Resolution on …

Category:  Health Go Health

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