EDITORIAL
Orphan lung diseases in children
Orphan lung diseases in childhood: still unadopted?
Correspondence to:
Correspondence to:
Dr A Jaffé
Portex Respiratory Medicine Group, Great Ormond Street Hospital for Children NHS Trust and Institute of Child Health, Great Ormond Street, London WC1N 3JH, UK; a.jaffe@ich.ucl.ac.uk
Despite recent initiatives, the UK is failing adequately to address the inequities in healthcare provision for children with rare lung disease
Keywords: orphan lung disease; rare lung diseases; children
| The first 150 words of the full text of this article appear below. |
Money drives research—whether it is for profit by drug companies or for academic status by universities. It is therefore not surprising that little has been done in the past for patients with rare lung diseases, where there is little financial incentive for drug companies or the small population does not merit sufficient grant funding for adequately powered clinical studies. This problem is further compounded in children where research is perceived to be even more difficult. Over the recent years, largely due to extensive lobbying from independent patient support groups, there has been a concerted effort by the European Parliament and the USA government to address these inequities.
The French originally coined the term "orphan" disease, now defined as a disease with a prevalence of less than 5 in 10 000 individuals, and they have been instrumental in addressing the many problems faced by patients suffering
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