16th May is the day of birth of Pf Jaeken's, the medical doctor that reported the first CDG patients more than 30 years ago.
This was decided using doodle selection amongst the CDG community. Let's support this campaign to make May 16th the World Congenital Disorders of Glycosylation (CDG) Awareness Day! AWARENESS for CDG is key, to accelerate therapeutic options! Please join us! |
"Society needs to know that Congenital Disorders of Glycosylation (CDG) is a serious cause of death and disability. Patients and family members, suffer directly the consequences of living with a disease, for which the most forms do not have a cure", highlights Rosália Félix, mother to Princess Liliana (Portugal).
"CDG is the prototype of condition that cries out for urgent visibility and awareness-raising actions", emphasizes Alfredo Ferreira, father to a CDG patient.
manifesto_text_declaration_of_world_awareness_day_for_cdg_fv_04.pdf | |
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manifesto_em_portugues_v02.pdf | |
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manifiesto_del_día_mundial_de_concienciación_sobre_los_cdg_esp_v02.pdf | |
File Size: | 132 kb |
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manifeste_texte_declaration_journee_mondiale_cdg_16_mai_v02.pdf | |
File Size: | 239 kb |
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statement_of_support_from_associations_to_support_wcdg_day_fv.pdf | |
File Size: | 217 kb |
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statement_of_support_from_professionals_to_support_wcdg_day_fv.pdf | |
File Size: | 198 kb |
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leaf_collecting_signatures_16th_may_as_annual_world_cdg_day.pdf | |
File Size: | 114 kb |
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