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

Become a member

RDI MEMBERS

RDI EVENTS

UHC for Rare Diseases - Developing the Key Pillars Together. 12 December 2022. 14.00 - 15.30 CET. On Universal Coverage Day. — UHC Day 2022 – Universal Health Coverage for Rare Diseases (HLPF), 12 December 2022, Online

Formal Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF), 6 July 2022, Online

Rare Diseases International’s Informal Side-Event to the 75^th World Health Assembly, 24 May 2022, Geneva

Rare Diseases International’s Informal Side-Event to the 75^th World Health Assembly, 24 May 2022, Geneva

Rare Disease Day 2022 Event, 28 February 2022, Dubai

Rare Disease Day 2022 Event, 28 February 2022, Dubai

global EVENTS

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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

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.

UHC INCLUDES RARE DISEASES

2019

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

AGREEMENT WITH WHO

2019

WHO and RDI sign a Memorandum of Understanding for future collaboration

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.”

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

Tweets by rarediseasesint

Toolkit on the UN Resolution on Persons Living with a Rare DIsease

Toolkit on Universal Health Coverage for Persons Living with a Rare Disease

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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