The Rare Diseases International (RDI)-Lancet Commission on Rare Diseases is a new initiative dedicated to improving the lives of Persons Living with a Rare Disease (PLWRD) globally by generating evidence-informed recommendations that can be implemented in all countries.
The RDI-LCRD, initiated and hosted by RDI and chaired by Dr. Roberto Giugliani (Brazil) and Dr. Kym Boycott (Canada), brings together 27 Commissioners from 6 continents with a broad range of expertise, perspectives, and experience from fields including academia, clinical practice, health economics, and patient advocacy. By aligning with The Lancet’s mission, this Commission leverages expertise from diverse fields, ensuring that its recommendations will drive impactful change in healthcare policy and practice.
The RDI-LCRD launch coincides with two significant milestones for the rare disease community. This week marks both the start of the month of Rare Disease Day (February 28th) and the opening of the meeting of the World Health Organization (WHO) Executive Board, comprised of 34 Member States, where the World Health Assembly (WHA) Resolution on Rare Diseases will be discussed. The WHA Resolution on Rare Diseases, currently co-sponsored by 21 Member States, will call upon the WHO to develop a 10-year Global Action Plan on Rare Diseases. This presents a momentous opportunity for rare diseases to become a global health priority after many years of being neglected and overlooked. This sets the context for the RDI-LCRD to inform government policies and actions, and to provide stakeholders with the data, insights, and recommendations they need to implement the future Resolution and Global Action Plan at the regional, national, and local levels.
PLWRD around the world continue to face challenges tied to the lack of visibility and recognition of rare diseases, leading to inequities in diagnosis, care, and support. Data on rare diseases is often sparse and fragmented, making it difficult to assess the true burden of rare diseases. The Commission will take a holistic and multidimensional approach to enhance the visibility of rare diseases and PLWRD. The RDI-LCRD will make specific actionable recommendations across five key areas, each supported by dedicated working groups: ethics and morals, data and metrics, societal and healthcare systems, clinical pathways, and healthcare professional competency. PLWRD will be essential partners in the RDI-LCRD: the working groups will invite PLWRD to share their knowledge and experience and identify the services, information, and supports they most need and want.
The Lancet Commission on Rare Diseases represents a pivotal opportunity to address the pressing needs of PLWRD and advocate for their inclusion in healthcare systems globally. The Commission seeks to generate robust data which can be used to inform concrete recommendations that can be implemented around the world and adapted to the local environment. The overarching goal of the RDI-LCRD is to ignite global action that will amplify the voices of PLWRD and ensure that they are seen, heard, and cared for, no matter where they live.
Read the Comment in the Lancet
Visit the website of the RDI-LCRD
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