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Patient as Research Partners

11/1/2017

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#RareDiseasesNews: Patients as partners in Research - Do we want it? YES When do we want it? NOW 
#PatientInvolvement #PatientledResearch #CDGandAllies http://bit.ly/2iHF4wx
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©2015 Portuguese Association for CDG and other Rare Metabolic Diseases (APCDG-DMR)
Contact us: sindromecdg@gmail.com
  • About US
    • What we do
    • Who we help
  • Research
    • WP1 Executive Commitee
    • WP2 CDG Diagnosis
    • WP3 CDG Genetics
    • WP4 Biology to guide CDG therapies >
      • WG CDG & GlycoImmunology
      • WG CDG & Cardioendocrine
      • WG CDG & Liver >
        • Project CDG & Liver
      • WG CDG & Neurology
      • WG CDG & Hematology
      • WG CDG & Ophtalmology
    • WP5 Systems Biology and Bioinformatics >
      • WG CDG & Biomedical Bioinformatics
      • WG CDG & Computational biology/chemistry
      • CDG & Metabolomics
      • WG CDG & Systems Biology
    • WP6 Clinical & Therapeutic CDG research >
      • WG CDG Patient reported Outcomes (PROMs)
      • WG CDG Pharmacological chaperones
      • WG CDG Portugal
    • WP7 CDG psychology and educational research >
      • WG CDG Health psychology
      • WG CDG Educational Special Needs and inclusion
      • WG CDG Language & Reading
    • WP8 CDG Lobby and Representation >
      • WG CDG patient-centered care
      • WG CDG Patient Representatives
    • WP9 Communication & Dissemination >
      • Eva Morava CDG one-to-one
      • Jaak Jaeken CDG one-to-one
      • Paula Videira CDG one-to-one
      • Andrea Berarducci CDG one-to-one
      • David Cassimani CDG one-to-one
    • WP10 Donations and funds
    • WP11 Collaborations & Open positions
    • WP12 Advisory committee
  • Resources
    • Publications
    • Task Force CDG Communication >
      • ALG1-CDG (CDG Ik)
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • About World CDG Awareness Day
    • Get involved World CDG Awareness Day 2017 >
      • Go Social World CDG Awareness Day
      • Spread World CDG Awareness Day
      • Plan An Event World CDG Awareness Day
      • Frame your CDG Awareness Campaign
      • Go green! Think CDG! ©Campaign
      • Volunteer World CDG Awareness Day
      • Press kit World CDG Awareness Day
    • Map of events for World CDG Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • CDG Patient Groups
    • Empowerment
  • Events
    • Speakers - World Conference on CDG
    • Registrations - World Conference on CDG
  • DONATE
  • BLOG
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