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NORD Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19

At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the National Organization for Rare Disorders (NORD®) launched its COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the COVID-19 pandemic. The program provides financial relief that may be utilized to support critical, non-medical needs.

Novel congenital disorder of O-linked glycosylation caused by GALNT2 loss of function

Congratulations to Dr Andrew Edmondson and to his team for this great international collaborative study describing novel GALNT2-CDG.

CDG: A Community of HOPE with Holly Carmichael

?‍♀️Holly Carmichael is a marvellous CDG Mom and Advocate. She is full-heartedly? committed to making sure her daughter? has the best life possible and Holly works every day to ensure that’s what she gets.

CDG: A Community of HOPE with David Coman

?‍⚕️Prof. David Coman is a Metabolic Pediatrician making sure CDG families and patients from Down under are well-cared for?. He is hopeful about the future of CDG patients and highlights the fact that we are now openly discussing different treatments for CDG.??
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EMA communication: COVID-19

Update on treatments and vaccines against COVID-19 under development & COVID-19: chloroquine and hydroxychloroquine only to be used in clinical trials or emergency use programmes

CDG: A Community of HOPE with Julia Boonak

?‍♀️This is Julia ?She is a CDG Mom ?‍♀️She is a CDG advocate She gives us HOPE!?