The Collaborative Global Network (CGN) 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.
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 hard 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, 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 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 CGN 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.
The vision for the CGN 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.
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.
- 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
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
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.
Patient-led project management and engagement of all stakeholder groups are at the heart of the CGN4RD.
The CGN Panel of Experts brings together over 250 clinicians and patient advocates to help validate project findings and provide input towards the development of the pilot phase of the Global Network.
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.
- Bolz-Johnson, et al. 2022. “Enhancing the value of clinical networks for rare diseases
- UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families”
- Downloadable infographic
For more information, contact, Matt Bolz Johnson