RDI-Lancet Commission on Rare Diseases
CIRS is participating in the Rare Diseases International-Lancet Commission on Rare Diseases (RDI-LCRD), which aims to catalyse global recognition and action for people living with a rare disease, driving systemic change to achieve Global Health 2035 goals and Universal Health Coverage.
The RDI-LCRD, initiated and hosted by Rare Diseases International (RDI) and chaired by Dr. Roberto Giugliani (Brazil) and Dr. Kym Boycott (Canada), brings together 27 Commissioners from six continents with a broad range of expertise, perspectives, and experience from fields including academia, clinical practice, health economics, and patient advocacy. As one of the Commissioners, Anna Somuyiwa (Head of CIRS) will provide CIRS insights on the regulatory and HTA landscape for rare diseases, including the views of regulators, HTA agencies and pharmaceutical companies, into the Commission’s work.
The RDI-LCRD represents a pivotal opportunity to address the pressing needs of people living with a rare disease 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 people living with a rare disease and ensure that they are seen, heard, and cared for, no matter where they live.
RDI-LCRD Objectives:
- Recommendations for action for stakeholders, including policymakers
- Creating an equitable RD ecosystem
- Integrated framework for diagnosis and care
- Holistic support for people living with rare diseases
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.
