COLLABORATe

GET INVOLVED AND FOLLOW THE PROGRESS OF GLOBAL COLLABORATIONS AND INTERNATIONAL MUTLI-STAKEHOLDER PARTNERSHIPS AROUND THE WORLD.

RDI working groups

GLOBAL NETWORK FOR RARE DISEASES

The Global Network for Rare Disease (GNRD) is an initiative in collaboration with the World Health Organization (WHO), aimed at developing a person-centred global network of care and expertise for all Persons Living with a Rare Disease (PLWRD) worldwide. The CGN Panel of Experts brings together over 250 clinicians and patient advocates to validate project findings and provide input towards the development of the pilot phase of the Global Network.

Rüdiger (WHO), Yann Le Cam (EURORDIS), Flaminia Macchia (RDI), Matt Bolz-Johnson (RDI), 75th World Health Assembly 2022

Meeting of the Global Network Panel of Experts, 2022

Gareth Baynam Western Australian Department of Health) & Lucia Monaco (RDI Volunteer)

75th WHO World Health Assembly 2022 Event

Working Group - Operational Description of Rare Diseases

RDI, working with a global panel of experts and collaborating with the WHO ICD, the International Classification of Diseases, has developed an internationally endorsed Operational Description of Rare Diseases. The description explains what diseases are considered rare, how many people are affected, and why the rare disease community requires specific attention.

Global Access Working Group

The Global Access Working was launched by RDI and the International Rare Diseases Research Consortium (IRDiRC) to improve access to rare disease treatments, with a specific focus on low-and-middle-income countries.

INITIATIVE	DESCRIPTION	GET INVOLVED
	A global initiative to tackle rare diseases through research and enable all Persons living with a Rare Disease to receive an accurate diagnosis, care, and available therapy.	Civil society groups can be part of the IRDiRC Patient Advocacy Constituent Committee composed of patient advocacy organisations from around the world. Individuals can also represent patient groups in multiple working groups and topic expert committees For more information, contact RDI Scientific Policy Manager, Mary Wang
	The NGO Committee for Rare Diseases aims to promote multi-stakeholder collaboration and actions for rare diseases within the United Nations system. It is established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)	The Committee is led three patient advocate groups - by Agrenska, EURORDIS - Rare Disease Europe, and Rare Diseases International (RDI). National, regional and international rare disease disease groups can become members of RDI and EURORDIS.
	The civil society constituent of UHC2030 the global movement to build stronger health systems for Universal Health Coverage. UHC2030 is initiated by the World Health Organization (WHO) and the World Bank.	Patient organizations, international organizations, and civil society organizations may apply to be members of UHC 2030's Civil Society Engagement Mechanism (CSEM).