Our association is based in Portugal, but our outreach is global!
CDG patients are globally dispersed. We truly believe that only by advocating, raising awareness and collaborating at a global level will we be able to find lasting and effective solutions for the CDG Community.
That's why we created the International Research network:
We are also preparing new international advocacy initiatives this year!
You will be supporting research projects in the field of Congenital Disorders of Glycosylation (CDG) and related disorders with very special features:
Led and inspired by patients and families’ needs;
Developed by a unique and pionneer international network of experts – physicians, researchers and families:
- Avoiding effort duplication; - Development of projects with global reach and impact; - Aggregation and canalization of knowledge and expertise.
In areas of unmet needs or limited knowledge with applicability in other rare and common diseases;
- Access to questionnaires and other resources (e.g patient-friendly documents in lay language. Like the one HERE): - Possibility to participate in research projects; - Access to workshops and other training events; - First hand access to results from CDG&Allies-PPAIN research projects; - Access to personalized research services for families and patients; - Access to updated information about several topics of interest for the Rare disease community; ; - Access to awareness and motivational campaigns.
What are we going to transform your donation into?
APCDG treats all information with secrecy and confidentiality. All information given by our members will be only used internally for statistical purposes of our institution as well as for divulgation/information purposes only when or if the members request it.
Thank you so much for being a driving force behind our initiatives!
APCDG-DMR: A non-profit organization, which congregates and represents CDG parents, relatives, friends and experts. APCDG-DMR informs that whom is interested in helping our organization should contact us by email at: firstname.lastname@example.org. We inform that never under any situation will we organize door to door or telephone based fundraising campaigns.