Global networking for rare diseases: RDI brings together stakeholders on sidelines of the World Health Assembly
On 24 May 2022 Rare Diseases International (RDI) organised an informal side event to the 75th World Health Assembly (WHA) in Geneva around networking of experts, centres of expertise and patient organisations to strengthen health systems for rare diseases and support those living with a rare disease to help achieve existing international commitments.
The event which united stakeholders from around the globe, both in person and virtually, was the occasion to take stock of achievements to date, cumulating in the adoption by the UN General Assembly on 21 December 2021 of the first UN Resolution on Persons Living with a Rare Diseases.
The informal side event was opened by Durhane Wong-Rieger, the Council Chair of RDI with a keynote address from the Director of the Health Promotion Department of the World Health Organization (WHO), Dr Rüdiger Krech who highlighted that, with rare diseases now recognised as a priority for the WHO and the WHA, the next step is to work towards collaborative networks for rare diseases at international level, on of the focuses of the event.
The first part of the event presented the outcomes of work carried out over the past two years by RDI with experts across the world in the scope of the WHO Collaborative Global Network for Rare Diseases (CGN4RD). The first presentation by Dr Mary Wang, Science Policy Manager for RD, detailed work carried out by RDI with the support of experts around the globe to reach a consensus on an operational description of rare diseases. This work is an essential element to help ensure that those collaborating together at a global level have a common understanding of the concepts concerning the definition of a rare disease. This was followed by a presentation by RDI Executive Director Flaminia Macchia on the number of ways in which global networking could be put into place to meet the needs of the over 300 million people living with a rare disease across the world by strengthening health systems, whilst keeping in mind the commitment to global health coverage for all. This was followed by a presentation on the key characteristics operational framework for a global rare disease network (GRDN) and the steps to make this ambition a reality, through an organisation of expert centres grouped into national, then into regional hubs, themselves networking at a global level.
The second part of the event included a rich multi-stakeholder panel discussion on the value of networking in care at a global level, with voices from patient groups, hospital managers and clinical experts from different regions around the world. Subjects broached included how to best build on existing resources to maximise output and how to insure that rare disease networking is inclusive of all regions and communities.
Closing addresses came from Martin Seychell, the Deputy Director General at the DG INTPA at the European Commission and Yann Le Cam, CEO of EURORDIS. Mr Seychell highlighted that "The term rare often deprioritises people living with rare diseases” but stressed that the world “cannot afford to leave behind such a large number of people !". The ambition to leave no one behind was echoed by Yann Le Cam in his take away message that outlined the next steps at the global level, amongst which is the ambition to work to a second resolution in 2024 to build on existing work to facilitate the visibility of those living with a rare disease and to improve the care they receive, notably citing the need to consolidate previous coding and classification work, and the work of the International Rare Disease Research Consortium. A long road ahead to resolve the structural and systemic barriers hindering equity for those living with a rare disease was painted, but that that journey, with the support of all stakeholders, and consideration of all communities, has now started, as stated by Yann Le Cam, "We create the change we want to see."
