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
  • [31] Healthcare for people with rare diseases: recommendations for successful intersectoral collaboration
    Inhestern, Laura
    Brandt, Maja
    Otto, Ramona
    Zybarth, David
    Haerter, Martin
    Bergelt, Corinna
    BUNDESGESUNDHEITSBLATT-GESUNDHEITSFORSCHUNG-GESUNDHEITSSCHUTZ, 2023, 66 (08) : 940 - 948
  • [32] OrphanAnesthesia – anesthesia recommendations for patients suffering from rare diseases
    Tino Münster
    Orphanet Journal of Rare Diseases, 9 (Suppl 1)
  • [33] The National Institutes of Health Undiagnosed Diseases Program: insights into rare diseases
    Gahl, William A.
    Markello, Thomas C.
    Toro, Camilo
    Fajardo, Karin Fuentes
    Sincan, Murat
    Gill, Fred
    Carlson-Donohoe, Hannah
    Gropman, Andrea
    Pierson, Tyler Mark
    Golas, Gretchen
    Wolfe, Lynne
    Groden, Catherine
    Godfrey, Rena
    Nehrebecky, Michele
    Wahl, Colleen
    Landis, Dennis M. D.
    Yang, Sandra
    Madeo, Anne
    Mullikin, James C.
    Boerkoel, Cornelius F.
    Tifft, Cynthia J.
    Adams, David
    GENETICS IN MEDICINE, 2012, 14 (01) : 51 - 59
  • [34] Do State Written Pandemic Plans Include Federal Recommendations? A National Study
    Klaiman, Tamar A.
    Ibrahim, Jennifer
    Hausman, Alice
    JOURNAL OF HOMELAND SECURITY AND EMERGENCY MANAGEMENT, 2009, 6 (01)
  • [35] NextGenerationEU and the European Semester: Comparing National Plans and Country-Specific Recommendations
    Guidi, Mattia
    Piccinetti, Michele
    Verzichelli, Luca
    POLITICS AND GOVERNANCE, 2023, 11 (04): : 339 - 351
  • [36] European Recommendations for Primary Prevention of Congenital Anomalies: A Joined Effort of EUROCAT and EUROPLAN Projects to Facilitate Inclusion of This Topic in the National Rare Disease Plans
    Taruscio, Domenica
    Arriola, Larraitz
    Baldi, Francesca
    Barisic, Ingeborg
    Bermejo-Sanchez, Eva
    Bianchi, Fabrizio
    Calzolari, Elisa
    Carbone, Pietro
    Curran, Rhonda
    Garne, Ester
    Gatt, Miriam
    Latos-Bielenska, Anna
    Khoshnood, Babak
    Irgens, Lorentz
    Mantovani, Alberto
    Martinez-Frias, Maria Luisa
    Neville, Amanda
    Rissmann, Anke
    Ruggeri, Stefania
    Wellesley, Diana
    Dolk, Helen
    PUBLIC HEALTH GENOMICS, 2014, 17 (02) : 115 - 123
  • [37] Development of Medicines for Rare Pediatric Diseases
    Marimpietri, Danilo
    Zuccari, Guendalina
    PHARMACEUTICALS, 2023, 16 (04)
  • [38] Management of future infectious diseases: eight recommendations for national quarantine
    Park, Hyoung Wook
    JOURNAL OF THE KOREAN MEDICAL ASSOCIATION, 2022, 65 (01): : 66 - 78
  • [39] Development of orphan drugs for rare diseases
    Yoo, Han-Wook
    CLINICAL AND EXPERIMENTAL PEDIATRICS, 2024, 67 (07) : 315 - 327
  • [40] Operational recommendations of the IV National Conference on the Prevention of Cardiovascular Diseases
    Urbinati, Stefano
    Vanuzzo, Diego
    Giampaoli, Simona
    GIORNALE ITALIANO DI CARDIOLOGIA, 2010, 11 (05) : 133S - 134S
12345