Eurordis

The European Organization for Rare Diseases (Eurordis) is a nonprofit organization which organizes over 930 rare disease groups into one alliance. Groups have joined the network from 73 different countries. The ultimate goal is to improve the quality of life of patients living with rare conditions.

This organization has recognized the impact that COVID-19 has had on rare disease patients. As such, they decided to conduct a patient survey to help inform the decisions of policymakers as the pandemic continues. The organization also published a letter addressed to policymakers which provided some recommendations.

COVID-19 and Rare Disease

At the beginning of the pandemic, many were hopeful it would pass quickly. But as the second wave hit Europe, that hope diminished. It became abundantly clear that we needed to work fast to develop a system of support for rare disease patients as the crisis continued. This system needs to be sustainable for a potentially long-term situation.

In Europe there are around 30 million individuals living with a rare disease. These patients have been particularly impacted by the lockdowns in response to COVID. They have been forced to cancel or reschedule appointments, pushing back needed care longer than is ideal for their treatment and well being.

In addition, telehealth appointments can be particularly difficult for rare disease patients. This can be incredibly challenging for many types of necessary follow up.

Patient Survey

In order to better understand the needs of rare disease patients during this time, Eurordis created a survey for both patients and caregivers to see how they could better advocate for their needs.

This survey was conducted early on in the pandemic (between April and May). As such, it reflects opinions which occurred during the first wave of the virus. 7,000 participants submitted the survey from across 36 countries in Europe.

Some of the notable results are as follows-

• 84% experienced a disruption in care
• 70-80% had appointments cancelled or postponed
• 60% could not access needed diagnostic tests
• 60% could not receive needed chemotherapies/infusions
• 60% had surgeries or transplants canceled
• 47% had exceptional difficulties accessing care because their care took place in a hospital and they had fear of catching COVID
• 34% were recommended not to go to their appointment due to it occurring in a hospital
• 25% were recommended not to go to their appointment unless it was in a closed facility
• 64% were concerned about interruptions of care
• 30% thought that this interruption was probably life threatening
• 9% thought that this interruption was definitely life threatening
• 60% said their mental health care had been harmed
• 75% said that they had faced depression since the onset of COVID-19
• 50% of patients had used a telemedicine appointment
  • 90% of patients found telehealth consultations beneficial
  • 98% found being able to electronically receive prescriptions helpful

Looking Forward

As lockdowns continue, it is essential for the above issues to be navigated. Postponing treatment can lead to severe deterioration in a patient’s condition.

The goal is that the above survey results will help to inform what decisions policymakers will make moving forward.

If you would like to participate in future surveys click here.

You can read more about the results from this survey here.