APCDG - Congenital Disorders of Glycosylation
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APCDG and Guia Metabolica: Relevant informative material on Rare Diseases is available in Portuguese

27/9/2015

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More than 50 Portuguese Professionals and Families participated in the translation from Spanish to Portuguese of relevant friendly resources that will increase understanding and knowledge in the field of Rare Metabolic Diseases.

More information at http://www.apcdg.com and http://www.guiametabolica.org/

Part of the material is currently available as PDF at the end of each article.
Please read and share at:
Patient registries
Autism in Rare diseases
Dysphagia I
Dysphagia II
Dysphagia III
From gene to protein
Epilepsy
Inform consent
Nasogastric tube
Diagnosis of a rare disease
Cryptorchidism













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CDG community united with Rarecommons to set up the pillars for future therapeutic studies

20/9/2015

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To raise awareness on CDG, rarecommons is interviewing several patient advocates. Please read the interviews and share with your family, friends and colleagues:

https://www.rarecommons.org/en
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Worldwide community teams up to boost CDG knowledge : soon many news will be shared

20/9/2015

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Lisbon, 20 September 2015- CDG patient groups is thrilled to announce that continues teaming up with Rarecommons. CDG is in a relevant moment as for research. The findings obtained so far are of great importance to shape future CDG therapeutic programs. Rarecommons is a research project on metabolic rare diseases, where families and professionals generate scientific knowledge united on a particular disease. As CDG is in a great need to boost clinical research, the resources and surveys to be fulfilled by families will be available in several languages.

CDG and Lowe Syndrome were considered as model diseases to start this project. Outcomes generated so far were: (1) the successful fundraising campaign needed to set up the platform, (2) the robust partnerships set up within families and professionals to create and translate the surveys and (3) altogether, CDG knowledge increased and consequently the reliable findings obtained so far on CDG, shapes the drug development in this complex disease.

Importantly, the project complements the overall existing research projects that are ongoing at this moment in other relevant international CDG laboratories. In addition, contributes to major sharing knowledge and brainstorming amongst CDG professionals.   More information: Website: https://www.rarecommons.org/en
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  • About US
    • What we do
    • Who we help >
      • Research
  • Resources
    • Rare CDG
    • Publications
    • Guia Metabolica
    • CDG Facts
    • Task Force CDG Communication >
      • PMM2-CDG (CDG Ia)
      • PGM1-CDG (CDG It)
      • ALG6-CDG (CDG Ic)
  • EDUCATION
  • Awareness
    • Get involved World CDG Awareness Day 2019 >
      • Go Social World CDG Awareness Day 19
      • Spread World CDG Awareness Day 19
      • Plan An Event World CDG Awareness Day 19
      • Frame your CDG Awareness Campaign 19
      • Go green! Think CDG! ©Campaign 19
      • Volunteer World CDG Awareness Day 19
      • Press kit World CDG Awareness Day 19
    • Map of events for World CDG Awareness Day 2019
    • CrowdCDG
    • Awareness Day 2018
    • Awareness Day 2017
    • Awareness Day 2016
    • Rare Diseases
  • Community
    • Join Us - Membership
    • CDG Patient Groups
    • Empowerment
  • Events
    • 1st CDG Satellite Meeting
    • Speakers - World Conference on CDG 2019
    • Registrations - World Conference on CDG 2019
    • Poster submission - World Conference on CDG 2019
    • Follow up - World Conference on CDG 19
    • Volunteer Registration - World Conference on CDG 2019
    • Previous Edition World Conference on CDG 2017 >
      • Follow up - World Conference on CDG 17
      • Speakers - World Conference on CDG 17
  • DONATE
  • BLOG