7th Liliana Scholarship - English.pdf
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NEW DEADLINE: 20TH JANUARY 2019

Fostering knowledge in a patient-centered manner

Welcome to a research project made with and for YOU!

If you have any doubt, please contact: rab.francisco@campus.fct.unl.pt  and /or (+351) 925718128
"If you want to go fast, go ALONE
If you want to go far, go TOGETHER!"
                                                                                                  - African proverb -

What?

The Immunology CDG Questionnaire (ImmunoCDGQ) allows you to contribute to advance knowledge on immune system-related problems in CDG  with a CLICK!
Watch the video below and learn all about the ImmunoCDGQ!

Who?

For Whom?
Institutions
Researchers/Clinicians
Family board of reviewers

Why should YOU participate?

See and listen WHY YOU should become our Research Partner!
La clinicienne et maman CDG Oriane Hostache explique pourquoi elle pense que les patients et les soignants CDG devraient prendre part à ce projet de recherche unique.
Dr Dorinda da Silva tells you why she thinks the ImmunoCDGQ is an important research project that you should join!
La mamma e avvocato Tatiana Rijoff spiega perché pensa che i pazienti e i caregivers CDG dovrebbero prendere parte a questo progetto di ricerca unico e molto importante -Questionario sull'Immunologia CDG per Pazientes & Caregivers "ImmunoCDGQ".
Sandra, la mama de Martim, explica como  TODAS las familias CDG puden contribuir para avanzar la investigación en el campo de la inmunología. Animate y participa!
Morgan, a truly amazing CDG champion shares her views on the importance of the CDG Community participating in this unique project - the Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.

QUESTIONNAIRE/QUESTIONÁRIO/CUESTIONARIO

FINAL DEADLINE: 20TH JANUARY 2019
Each botton below gives you access to the ImmunoCDGQ online questionnaire.
Choose your language:

Helping you feel prepared: Supportive documents

Information  for Participants: All you need to know
Interactive Resources 
A Prezi presentation about Immunology Basics to help you learn about the immune system in a fun way. It can take 15-20 min to watch.
Find it HERE
An interactive tip guide for a smooth participation in the ImmunoCDGQ.
It clarifies many tecnhical aspects and possible tricky subjects.
Find it HERE
Patient-Friendly Document: Immunological involvement in Congenital Disorders of Glycosylation (CDG) - A community-friendly document

10 Days = 10 CDG Immunology Facts

These are 11 posts (including an introduction post) about immune  system involvement in CDG. Sugars are present across various cells and proteins of the immune system (e.g sugars are present in antibodies). As CDG patients have defective sugar trees, their immune responses may be altered as well.

This campaign aims to empower and inform families on this topic. It touches on basic immunology concepts and then goes into more depth about CDG-related topics.
Scientific revision of the literature: Immunological aspects of congenital disorders of glycosylation (CDG): a review
You can find the abstract HERE  and order the complete article HERE.
Mini GLOSSARIES about Immunology and CDG
ENGLISH
Mini GLOSSARIES
​ITALIANO
Mini GLOSSARIOS
FRANÇAIS
Mini GLOSSAIRE
ARABIC
Mini-GLOSSARIES

MetabERN (the ERN for Hereditary Metabolic Disorders)

is a partner of this project!

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