Building treasures for rare disorders-Reference-Cited by-同舟云学术

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Building treasures for rare disorders

Published:2015-01 Issue:1 Volume:58 Page:11-13
ISSN:1769-7212
Container-title:European Journal of Medical Genetics
language:en
Short-container-title:European Journal of Medical Genetics

Author:

Baas Melanie,Huisman Sylvia,van Heukelingen John^ORCID,Koekkoek Gerritjan^ORCID,Laan Henk-Willem,Hennekam Raoul C.

Publisher

Elsevier BV

Subject

Genetics(clinical),Genetics,General Medicine

Reference11 articles.

1. Empowerment of patients: lessons from the rare diseases;Ayme;Lancet,2008

2. Care for patients with ultra-rare disorders;Hennekam;Eur J Med Genet,2011

3. http://ec.europa.eu/health/rare_diseases/policy/index_en.htm (Accessed 15.04.14).

4. http://statline.cbs.nl/StatWeb/publication/?DM=SLNL&PA=71098ned&D1=33-133&D2=0-2&D3=a&VW=T (Accessed 15.04.14).

5. http://thuisarts.nl/ (Accessed 15.04.14).

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1. Natural history in Malan syndrome: survey of 28 adults and literature review;Orphanet Journal of Rare Diseases;2024-07-29

2. Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus;Orphanet Journal of Rare Diseases;2023-04-28

3. Multidisciplinary Management of Costello Syndrome: Current Perspectives;Journal of Multidisciplinary Healthcare;2022-06

4. Psychosoziale Belastungsfaktoren und Versorgung bei seltenen onkologischen Erkrankungen;Der Onkologe;2019-11-20

5. Diagnosis and management in Pitt-Hopkins syndrome: First international consensus statement;Clinical Genetics;2019-02-18

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