Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis-Reference-Cited by-同舟云学术

Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis

Published:2018-08-29 Issue:1 Volume:18 Page:
ISSN:1472-6963
Container-title:BMC Health Services Research
language:en
Short-container-title:BMC Health Serv Res

Author:

Merker Vanessa L.^ORCID,Dai Annie,Radtke Heather B.,Knight Pamela,Jordan Justin T.,Plotkin Scott R.

Publisher

Springer Science and Business Media LLC

Subject

Health Policy

Link

http://link.springer.com/content/pdf/10.1186/s12913-018-3471-5.pdf

Reference22 articles.

1. Schieppati A, Henter JI, Daina E, Aperia A. Why rare diseases are an important medical and social issue. Lancet. 2008;371:2039–41.

2. Rasmussen SA, Friedman JM. NF1 gene and neurofibromatosis 1. Am J Epidemiol. 2000;151:33–40.

3. Evans DG, Moran A, King A, Saeed S, Gurusinghe N, Ramsden R. Incidence of vestibular schwannoma and neurofibromatosis 2 in the northwest of England over a 10-year period: higher incidence than previously thought. Otol Neurotol. 2005;26:93–7.

4. Merker VL, Esparza S, Smith MJ, Stemmer-Rachamimov A, Poltkin SR. Clinical features of Schwannomatosis: a retrospective analysis of 87 patients. Oncologist. 2012;17:1317–22.

5. Evans DG, Howard E, Giblin C, et al. Birth incidence and prevalence of tumor-prone syndromes: estimates from a UK family genetic register service. Am J Med Genet. 2010;152A:327–2.

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