COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients

EURORDIS issued a statement after reports from members organisations and inviduals informed that rare disease patients are being discriminated against in critical care designed to move towards a prioritisation of patients during the pandemic the world is currently facing.
EURORDIS, which represents over 905 rare disease patient organisations in 72 countries, called for immediate actions and concrete solutions for rare disease patients to be given optimal care during the COVID-19 crisis. They have provided proposals to help healthcare providers during this crisis including:
  • an immediate revision of all triage guidelines that could lead to the discrimination or de-prioritisation of people living with a rare disease during treatment for COVID-19
  • ensure sufficient ICU beds (including in temporary hospitals) and respiratory aid equipment
  • the on-duty/ ICU doctor contact thepatient’s permanent medical practitioner and/or expert centre when a rare disease patient shows COVID-19 symptoms
  • allowing carers of rare disease patients to attend the ICU and support doctors in their relative’s treatment plan and care because they are experts in the specific rare disease
  • considering temporary special hospital wards dedicated to particularly vulnerable rare disease patients affected by COVID-19 whenever possible
  • use of the Clinical Patient Management System (CPMS) to facilitate exchanges between experts in rare disease European Reference Networks for those patients affected by COVID-19
  • people living with rare diseases to be included as a priority population in preventative measuresto stop the spread of COVID-19
You can read the full statement here.