8:40 am - OPENING KEYNOTE PANEL: Progressing Rare disease diagnosis, care and treatment to improve health outcomes for patients with rare diseases 9:20 am - OPENING KEYNOTE: Update on England's Rare Diseases Action Plan 9:50 am - KEYNOTE SESSION: The DACMAR Advantage: This approach helps...
As we reflect on the progress made at ECRD 2024, to translate the current political momentum into comprehensive actions for the EU’s next cohort of policymakers and leaders, we hope that Aspire4Rare is an enduring call to action for the rare disease community. The initia...
Orphanet Journal of Rare Diseases 2024, 18(1): P9 The Patient Lifestyle and Disease Data Interactium (PaLaDIn), is an ambitious four-year Innovative Health Initiative (IHI) funded initiative which launched on 1st January 2024. PaLaDIn [https://www.project-paladin.eu/] will drive innovative re...
Methods: This action plan was designed through an ethical inquiry conducted by the Ethics and Rare Diseases Working Group , which included 3 patient partners, 2 clinician researchers, and 1 representative from Qu茅bec's rare disease association. Results: The plan is structured into 4 component...
How has rare disease care changed over the last few years? And what might we expect from the next five? We attended the Rare Disease Day Virtual Parliamentary Event to find out. The rare disease community has a golden opportunity to transform the way car
Brief report: assessment of barriers to mental health services among caregivers of children with rare disease Article Open access 01 August 2024 Disparities in Quality and Access to Care for Children with Developmental Disabilities and Multiple Health Conditions Article 16 July 2016 Disparities in...
1 Global Genes. Rare Disease Facts. Available at: https://globalgenes.org/rare-disease-facts/. Last accessed: May 2024. 2 EURORDIS. Earlier, faster and more accurate diagnosis. Available at: https://www.eurordis.org/our-priorities/diagnosis/. Last accessed: May 2024. ...
Rare disease (RD) management and orphan drug development in India face various hurdles regarding the implementation and adoption of comprehensive policies, lack of dedicated regulatory frameworks, and absence of epidemiological data. Current rare disease policy focuses more on strengthening the diagnostics ...
NEW YORK and BRUSSELS, Feb. 20, 2019 /PRNewswire/ -- Takeda, Microsoft and EURORDIS release report with action plan to help rare disease community shorten the diagnostic odyssey
Rare disease (RD) management and orphan drug development in India face various hurdles regarding the implementation and adoption of comprehensive policies, lack of dedicated regulatory frameworks, and absence of epidemiological data. Current rare disease