European Organisation for Rare Diseases recommendations

EURORDIS recommendations

EURORDIS has created a COVID-19 Information Resource Centre where you can find statements, sources of official information, and information/ activities organised in response to the pandemic that EURORDIS has received through the network.
EURORDIS is also conducting a survey (through the Rare Barometer Voices initiative) for patients affected by a rare disease or caregivers, collecting experiences on how the COVID-19 pandemic is affecting them.
The survey will only take around 15 minutes to answer and will help EURORDIS to voice the specific needs of rare disease patients in relation to the COVID-19 pandemic and to propose practical solutions to ensure rare diseases patients are take into account when handling the pandemic.

EURORDIS statement on how to protect people living with a rare disease as confinement measures are being lifted (10/06/2020)
EURORDIS statement on a new era of collective decision making in health (14/05/2020)
EURORDIS statement on people experiencing interruption in care because of COVID-19 (4/05/2020)
EURORDIS open letter to policy makers (8/04/2020)
EURORDIS statement on COVID-19 Triage
NORD-EURORDIS Joint Statement on COVID-19 and Orphan Drug Legislation (30/03/2020)
EURORDIS statement on Remdesivir (25/03/2020)
EURORDIS statement on Covid-19 (17/03/2020)

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