Rare childhood diseases: how should we respond?
review · Level V
Where this comes from
- Record sourced from PubMed, PMID 18684747.
- Also identified by DOI 10.1136/adc.2007.134940.
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Abstract
Paradoxically, rare diseases are common, collectively affecting 6-10% of the population and have a huge impact on patients and families, health services, clinicians and the wider community. Accurate data are required to inform clinical practice, government policy and health service planning. We recommend a national approach, similar to that adopted in the USA and Europe, to support research and promote advocacy and equitable access to services for children with rare diseases.
Medical subject headings
- Delivery of Health Care
- Fetal Alcohol Spectrum Disorders
- Rare Diseases
- Rett Syndrome