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Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate
BACKGROUND: Many people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families...
保存先:
| 出版年: | Orphanet J Rare Dis |
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| 主要な著者: | , , , , , , , |
| フォーマット: | Artigo |
| 言語: | Inglês |
| 出版事項: |
BioMed Central
2020
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| 主題: | |
| オンライン･アクセス: | https://ncbi.nlm.nih.gov/pmc/articles/PMC7649905/ https://ncbi.nlm.nih.gov/pubmed/33168042 https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-020-01559-6 |
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