The Collaborative Global Network for Rare Diseases (CGN) is an initiative engaging and supporting the global rare disease community to develop a person-centred network of care and expertise for all Persons Living with a Rare Disease (PLWRD) around the world.
Persons Living with a Rare Disease (PLWRD) represent a large global population of over 300 million persons.
PLWRD experiences common challenges that stem from a lack of awareness of rare diseases at different levels of society from healthcare providers to policymakers and the broader community.
The low prevalence of rare diseases results in a lack of medical knowledge, expertise and standards of care, as well as unclear patient pathways to care.
And whilst health professionals, centres of care and patient groups are willing to collaborate nationally and regionally, there is a need for infrastructure and digital capacity to support meaningful collaboration. The CGN aims to breach this gap by helping to develop an international network to drive peer-to-peer learning and the sharing of knowledge, resources and capacities.
The vision for the CGN is anchored in the UN’s commitment to Universal Health Coverage and the 2030 Agenda, which promotes health equity by addressing the needs of the most vulnerable – “To leave no one behind.”
Sustainable Development Goals
Break down barriers to accessing care.
Universal Health Coverage
Strengthen health systems and pathways to diagnosis for all.
Global Community Engagement
Collaborate and connect expertise to expand care PLWRD
- 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
- Develop local capacities and strengthen health systems
components of Emerging 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 included in RDI’s Memorandum of Understanding with the WHO. As a representative of the global community of PLWRD, RDI has undertaken and shared a Population Needs Assessment Study including a Concept Model of the network.
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.
Report on Common Needs
In 2020, over 60 patient representatives took part in regular focus group meetings and gave input toward the development of a 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.
For more information contact, Matt Bolz Johnson