Global Network for rare diseases

The Global Network for Rare Disease (GNRD) is an initiative engaging and supporting the rare disease community to develop a person-centred global network of care and expertise for all Persons Living with a Rare Disease (PLWRD) worldwide.

Colombia – Prader Willi

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 complex nature of rare diseases and their infrequency require an evolution in the model of care, from a multi-disciplinary approach to a “networked care” model, through which expertise can be accessed from across a national, regional and global network of experts to inform care locally.

The GNRD aims to harness advances in digital technologies to foster the development of an international network to drive peer-to-peer learning and the sharing of knowledge, resources and capacities to strengthen health systems for rare diseases.


POLICY FRAMEWORK

The vision for the GNRD is anchored in the UN Political Declaration on Universal Health Coverage (2019) which commits the UN and Member States to achieve Universal Health Coverage (UHC) by 2030, “to scale up the global effort to build a healthier world for all”, including those living with a rare disease.

This commitment to UHC for rare diseases is reinforced by the UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families (2021), which encourages the fostering of networks of care and recognises rare diseases as a global policy priority.

Encourages Member States to foster the creation of networks of experts and multidisciplinary specialized expert hubs

Un Resolution on Persons Living with a Rare Disease and their Families, 2021

UN Resolution on PLWRD

Give visibility and recognition to the challenges of PLWRD

Sustainable Development Goals
Break down barriers to accessing care.

Universal Health Coverage
Strengthen health systems and pathways to diagnosis for all.


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

components of the proposed Network:

National Hubs – nationally endorsed centres connecting under a national hub-and-spoke model

Regional Hubs – virtual multi-centre collaborative hubs of expert centres and patient organisations

Global Network – a global learning system and knowledge-sharing network, informing global public health action and leveraging technology to extend care for rare diseases around the world


Engaging WHO

Work towards the proposed Network is a part of RDI’s Memorandum of Understanding with the WHO.

RDI has shared a Population Needs Assessment Study (2021), Concept Model (2021) and Operational Framework for the proposed Global Network with the WHO.


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

These conversations are part of a series of interviews with members of the Global Network Panel of Experts, the multi-stakeholder expert group shaping the development of the GNRD.

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.

REPORTS

Over 60 patient representatives participated in regular focus group meetings that fed into the Population Needs Assessment Study.

Following this consultation, RDI published – “Common Needs of the Rare Disease Population Identified Globally“, a report on the shared needs identified by rare disease patient organisations worldwide.


Key Resources

For more information, contact, Matt Bolz Johnson