Recommendations for the development of national plans for rare diseases

被引：0
|
作者：
Albert Van der Zeijden
Jolanda Huizer
机构：
[1] Dutch Steering Committee OD,
来源：
Orphanet Journal of Rare Diseases | / 5卷 / Suppl 1期
关键词：
Member State; Rare Disease; Policy Action; Guidance Document; Equal Access;
D O I：
10.1186/1750-1172-5-S1-O3
中图分类号：
学科分类号：
摘要：
引用
收藏
相关论文
共 50 条
  • [21] The Italian National Plan for Rare Diseases
    Congiu, Maria Elena
    BLOOD TRANSFUSION, 2014, 12 : S614 - S616
  • [22] Recommendations for whole genome sequencing in diagnostics for rare diseases
    Souche, Erika
    Beltran, Sergi
    Brosens, Erwin
    Belmont, John W.
    Fossum, Magdalena
    Riess, Olaf
    Gilissen, Christian
    Ardeshirdavani, Amin
    Houge, Gunnar
    van Gijn, Marielle
    Clayton-Smith, Jill
    Synofzik, Matthis
    de Leeuw, Nicole
    Deans, Zandra C.
    Dincer, Yasemin
    Eck, Sebastian H.
    van eer Crabben, Saskia
    Balasubramanian, Meena
    Graessner, Holm
    Sturm, Marc
    Firth, Helen
    Ferlini, Alessandra
    Nabbout, Rima
    De Baere, Elfride
    Liehr, Thomas
    Macek, Milan
    Matthijs, Gert
    Scheffer, Hans
    Bauer, Peter
    Yntema, Helger G.
    Weiss, Marjan M.
    EUROPEAN JOURNAL OF HUMAN GENETICS, 2022, 30 (09) : 1017 - 1021
  • [23] Recommendations for whole genome sequencing in diagnostics for rare diseases
    Erika Souche
    Sergi Beltran
    Erwin Brosens
    John W. Belmont
    Magdalena Fossum
    Olaf Riess
    Christian Gilissen
    Amin Ardeshirdavani
    Gunnar Houge
    Marielle van Gijn
    Jill Clayton-Smith
    Matthis Synofzik
    Nicole de Leeuw
    Zandra C. Deans
    Yasemin Dincer
    Sebastian H. Eck
    Saskia van der Crabben
    Meena Balasubramanian
    Holm Graessner
    Marc Sturm
    Helen Firth
    Alessandra Ferlini
    Rima Nabbout
    Elfride De Baere
    Thomas Liehr
    Milan Macek
    Gert Matthijs
    Hans Scheffer
    Peter Bauer
    Helger G. Yntema
    Marjan M. Weiss
    European Journal of Human Genetics, 2022, 30 : 1017 - 1021
  • [24] Developing a national plan for rare diseases in Germany through concerted action: the national action league for people with rare diseases
    Véronique Héon-Klin
    Alexandra Halbach
    Miriam Schlangen
    Birgit Schnieders
    Orphanet Journal of Rare Diseases, 7 (Suppl 2)
  • [25] The development of national multisectoral action plans for the prevention and control of noncommunicable diseases: experiences of national-level stakeholders in four countries
    Wickramasinghe, Kremlin
    Wilkins, Elizabeth
    Foster, Charlie
    Fadhil, Ibtihal
    Hammerich, Asmus
    Slama, Slim
    El Berri, Hicham
    Elimam, Manal
    Adib, Salim
    Al-Mudwahi, Mona
    Townsend, Nick
    GLOBAL HEALTH ACTION, 2018, 11 (01)
  • [26] National planning guidelines and development plans in Scotland
    LLoyd, MG
    LOCAL GOVERNMENT STUDIES, 1996, 22 (04) : 262 - 272
  • [27] National plan for rare diseases: A plan to another
    Tchernia, Gil
    Le Henanff, Guillaume
    Roussille, Bernadette
    Kremp-Roussey, Odile
    PRESSE MEDICALE, 2010, 39 (05): : 17 - 20
  • [28] The National Plan for rare diseases, an opportunity for patients
    Guillevin, Loic
    PRESSE MEDICALE, 2008, 37 (01): : 3 - 5
  • [29] Hungarian National Plan and Strategy for Rare Diseases
    Kosztolanyi Gyoergy
    ORVOSI HETILAP, 2014, 155 (09) : 325 - 328
  • [30] ESTABLISHMENT OF A NATIONAL COORDINATION CENTER FOR RARE DISEASES
    Cap, M.
    Porzelius, C.
    Hauschke, D.
    Schuhmacher, M.
    Kirschner, J.
    BRITISH JOURNAL OF CLINICAL PHARMACOLOGY, 2011, 72 : 31 - 31
12345