Global Network for rare diseases - Rare Diseases International

The Global Network for Rare Disease (GNRD) is a flagship initiative to strengthen health systems for rare diseases by creating a global network of specialized expertise. The strategic initiative emphasizes equity, inclusion, and the principle of “leaving no one behind”.

The Challenge

Persons 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 identified to date, expertise is scarce and scattered, available in only a small number of medical centres, and varies per region.

The low number of cases for each rare disease makes it difficult for healthcare systems to develop expertise locally and for patients to reach a timely and accurate diagnosis.

The health inequities faced by Persons Living with a Rare Disease are amplified in countries with small populations and low-and-middle-income countries.

Furthermore, the majority of rare diseases are complex and multi-systemic, requiring coordinated and integrated responses from health systems.

Networking experts, clinics, expert centres and patient organisations is a necessary step to strengthening health care systems for rare diseases and Persons Living with a Rare Disease.

the Vision

The vision of the GNRD is a world where all PLWRD, no matter where they live, have access to timely and accurate diagnosis, as well as to safe and reliable quality care. This vision is anchored in the concept of Universal Health Coverage (UHC) to address the health needs of the most vulnerable for an inclusive society.

The GNRD is meant to be a learning health system, harnessing centers’ expertise and experience and pooling resources to build knowledge on rare diseases globally and strengthening healthcare delivery systems locally.

The Mission

Develop local capacities and strengthen health systems
Raise awareness amongst policy-makers, civil society, centres of expertise and professionals to improve recognition, diagnosis and care
Break down barriers to care experienced by PLWRD through clear care pathways
Connect multi-disciplined expert centres and teams regionally
Pool and reinforce existing expertise, knowledge and resources
Encourage the development of a global learning health system through the sharing of information and data

the network

Global Network Framework

The framework of the Global Network for Rare Diseases builds on three core pillars designed to enhance international collaboration and improve access to expert care worldwide:

Pooling expertise: Provide digital infrastructure to support collaboration and pooling of expertise.

Knowledge management: Exchange expertise, gather information and disseminate knowledge and best practices.

Virtual Advice and Consultation: Support access to specialist advice, diagnosis, and treatment to ensure that the expertise travels rather than the patient.

Engaging WHO

The collaboration between WHO and RDI has supported the development of the Global Network for Rare Diseases Concept and contributed to advancing the implementation of the Operational Framework and the preparation for the proof-of-concept phase.

Community Engagement

Patient-led project management and engagement of all stakeholder groups are at the heart of the GNRD.

The Global Network Panel of Experts brings together over 250 clinicians, administrators, researchers, administrators and patient advocates to help validate project findings and provide input towards the development of the pilot phase of the Global Network.

global network expert series

A series of interviews with members of the Global Network Panel of Experts, the multi-stakeholder expert group shaping the development of the GNRD. Read the articles below, and follow #GN4RARE on social Media.