COVID-19 Recommendations for all Rare IMD Patients and Caregivers

MetabERN Recommendations for all Rare Inherited Metabolic Diseases patients and caregivers about treatment adherence during the COVID-19 emergency

The COVID-19 pandemic is testing the resilience of robust health systems around the world. This may be impacting you in many different ways, such as creating additional anxiety or exacerbating other medical or therapy issues related to your Inherited Metabolic Disease (IMD).  In this difficult period MetabERN underlines the critical importance of sustaining efforts to prevent, diagnose and treat Inherited Metabolic Diseases (IMDs) assuring the continuation of the quality of care provided to you.

To help the entire metabolic community, we have developed some recommendations that aim to support all rare IMD patients and caregivers during the COVID-19 emergency.

The Clinical Management Support System (COVID19 CMSS)

The European Commission has started this initiative to support the clinicians and healthcare providers dealing with the care of COVID-19 infected patients, the Clinical Management Support System (COVID19 CMSS) that allows sharing clinical knowledge and expertise among peers.

Based on the European Reference Network System, the COVID19 –CMSS is aiming to allow clinicians to communicate easily with any other colleagues across the EU, the UK and EEA to exchange knowledge and discuss cases, as the gained clinical experience can represent an important contribution which could benefit hundreds of patients and healthcare professionals.

Any healthcare professional involved in complex COVID-19 cases can access the Web Conferencing system and get the support of a dedicated Helpdesk by registering through this link: https://ec.europa.eu/eusurvey/runner/COVID19CENTRES where you will find a detailed description of the system (factsheet) and a privacy statement in compliance with the GDPR.

After to your registration, we will contact you and provide you with the data of all participants and with operational aspects and instructions on the use of the system.

Should you know of any other professional willing to benefit of this Web Conferencing system, please do not hesitate to forward this invitation to your peers.