THE GLOBAL ALLIANCE OF PERSONS LIVING WITH A RARE DISEASE

RDI IS A STRONG VOICE FOR PERSONS LIVING WITH A RARE DISEASE AND THEIR FAMILIES AROUND THE WORLD.

LATEST NEWS

our priorities

World Health Assembly Resolution on Rare Diseases

Universal Health Coverage

Collaborative Global Network for Rare Diseases

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milestones

RARE DISEASES INTERNATIONAL RARE DISEASES INTERNATIONAL
FIRST UN POLICY EVENT FIRST UN POLICY EVENT
UHC INCLUDES RARE DISEASES UHC INCLUDES RARE DISEASES
AGREEMENT WITH WHO AGREEMENT WITH WHO
UN RESOLUTION UN RESOLUTION
GLOBAL ADVOCACY CAMPAIGN GLOBAL ADVOCACY CAMPAIGN
UN Political Declaration on UHC UN Political Declaration on UHC

RARE DISEASES INTERNATIONAL

2015

RDI is initiated by EURORDIS and Rare Disease National Alliances for the USA, Canada, Japan, Australia and Russia. Read More

FIRST UN POLICY EVENT

2019

RDI co-hosts the first Rare Disease Day Policy Event at the United Nations.

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UHC INCLUDES RARE DISEASES

2019

Rare Diseases are included  in the UN Political Declaration on Universal Health Coverage

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AGREEMENT WITH WHO

2019

WHO and RDI sign a Memorandum of Understanding for future collaboration

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UN RESOLUTION

2021

The UN adopts the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”

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GLOBAL ADVOCACY CAMPAIGN

2021

Families and rare diseases organisations around the world lead a global advocacy campaign calling for the adoption of a Un Resolution in 2021

Advocacy Toolkit

UN Political Declaration on UHC

2023

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

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EVENTS

Today

toolkits & Resources

Toolkit on the UN Resolution on Persons Living with a Rare DIsease
#ACT4RARE
Toolkit on Universal Health Coverage for Persons Living with a Rare Disease
#UHC4RARE

articles & papers

global network expert series

Follow #GN4RARE on RDI social media to read monthly discussions with the Panel of Experts, the diverse multistakeholder group supporting the development of the Global Network for Rare Diseases.
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