ReviewThe Lancet regional health. Europe2024
Rare diseases: still on the fringes of universal health coverage in Europe.
Review in The Lancet regional health. Europe, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 12 citations in OpenAlex.
- Consensus Guidelines for Diagnosis and Management of Pyruvate Dehydrogenase Complex Deficiency.Journal of inherited metabolic disease · 2026Review
- Rebalancing innovation, affordability, and access for orphan drugs in the European Union.The Lancet regional health. Europe · 2026Review
- Two Decades of Progress and Remaining Challenges: Comparative Analysis of Rare Disease Policy Implementation in Bulgaria, Romania, and Greece.Therapeutic innovation & regulatory science · 2026Article
- Health service access and delivery for people living with rare disorders: a scoping review.Orphanet journal of rare diseases · 2026Article
- Extracting homogenous data from heterogenous diseases: RaraSwed, the Swedish national rare disease quality registry.BMC global and public health · 2026Review
- [Rare diseases: the role of internal medicine].Innere Medizin (Heidelberg, Germany) · 2025Review
- Improving quality of life in rare diseases using disease-specific, multidisciplinary online interventions on the example of rare X-linked adrenoleukodystrophy: a randomized-controlled trial.Therapeutic advances in neurological disorders · 2025Article
- The role of public health in rare diseases: hemophilia as an example.Frontiers in public health · 2025Review
- Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey.European journal of human genetics : EJHG · 2024Article
- Impact of mental health in persons living with rare disease: Findings from the AMCP Market Insights Program.Journal of managed care & specialty pharmacy · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Despite general advancements in population health indicators and universal health coverage, people living with rare diseases and their families still experience considerable unmet needs, including prolonged diagnostic journeys, limited treatment options, and a huge psychosocial burden due to the lack of coordinated, integrated care. Attainment of universal health coverage for rare diseases is dependent on fundamentally different health determinants and demands for different solutions. This involves consolidating expertise through Centers of Excellence, establishing efficient care pathways, fostering extensive collaboration at European and global levels in research and healthcare, and putting patients at the center of care. Furthermore, development of specific indicators and coding systems is crucial for monitoring progress. Only in this way Europe can strive towards a future where people living with rare diseases receive the same level of equitable, safe, high-quality healthcare as other members of the society, in alignment with the overarching goal of leaving no one behind.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.