Dr. Andrew Edmondson from Children’s Hospital of Philadelphia, USA, was present on the September’s PMM2-CDG Collaboration call organized by Amour Fund to share with us the latest updates about COVID-19 and the CDG experience related with this topic. The recording is now available. Check it out!
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.
Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. It provides funds for essential expenses including, but not limited to unexpected utility expenses; cellular or internet service; emergency repairs to car, home or major appliances; and rent or mortgage payment assistance. Interested rare disease patients and families can reach out to NORD to find out if they meet eligibility requirements.
The European Medicines Agency (EMA) shared two press releases related to COVID-19:
Find an Update on treatments and vaccines against COVID-19 under development HERE.
Find the communication about the use of anti-malarial medicines for COVID-19 - COVID-19: chloroquine and hydroxychloroquine only to be used in clinical trials or emergency use programmes - HERE, which includes information to patients and healthcare professionals.
