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.

our priorities

UN Resolution on Persons Living with a Rare Disease

Universal Health Coverage

Collaborative Global Network for Rare Diseases

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RDI MEMBERS

RDI EVENTS

#ACT4RARE Toolkit – NEW UN Resolution Toolkit Launch,, 12 October 2022 – 14/00 CET

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Formal Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF), 6 July 2022, Online
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Rare Diseases International’s Informal Side-Event to the 75th World Health Assembly, 24 May 2022, Geneva
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Rare Disease Day 2022 Event, 28 February 2022, Dubai
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global EVENTS

Today

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

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

SOCIAL MEDIA

articles & papers

global network expert series

Professor Carmencita Padilla, Professor of Pediatrics at the College of Medicine, University of the Philippines shares successes and struggles implementing a Newborn Screening Programme across the over 7000 islands of the Philippines.
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