People living with a rare disease were severely
impacted during first COVID-19 wave: 30 million people
in Europe must not be forgotten once again
Survey shows 84% of people living with a rare disease experienced
disruption of care
11 November 2020, Brussels – EURORDIS-Rare Diseases Europe publishes the final results of amulti-country survey highlighting the detrimental effect of the first wave of the global pandemic
on 30 million people living with a rare disease in Europe, and calls for continued and reinforced
efforts to protect this vulnerable population during the current second wave and beyond.
The COVID-19 pandemic has exacerbated many of the daily challenges of those living with a raredisease and has created extra risks in their everyday lives, according to a survey of almost 7000
respondents from across Europe.
As the region is faced with a second wave of COVID-19, EURORDIS-Rare Diseases Europe iscalling on policy makers to ensure that the devastating impact of the pandemic does not become
the new normal for people living with a rare disease. The results of the survey conducted during
the first wave can meaningfully be extrapolated to the ongoing second wave and beyond.
Carried out between 18 April and 11 May 2020, the survey recorded the significant impact thatthe first wave of the COVID-19 pandemic was having on the treatment, care and living conditionsof 7000 people living with a rare disease or caring for rare disease patients across Europe.
84% of European rare disease patients surveyed experienced some sort of disruptionof their care due to the COVID-19 crisis.
o 64% of respondents said that they were concerned this would be detrimental
to their health or the health of the person they care for.
o 3 in 10 respondents reported that this would probably (2 in 10) or definitely (1in 10) be life-threatening.

Among those who reported a disruption of care:o 6 in 10 were unable to access diagnostic tests
o 6 in 10 were unable to receive therapies such as chemotherapies or infusionso 6 in 10 saw their surgery or transplant postponed or cancelled.

As rare diseases are often highly debilitating and life threatening, this wait for diagnostic tests orfor medical interventions can result in a severe deterioration of symptoms.

1/3In addition, these disruptions to care and the isolation experienced during lockdowns had a severe
impact on the mental health of people living with a rare disease, with almost 6 in 10 seeing their
psychiatry follow-up interrupted and two thirds of respondents suffering from depression
and/or a feeling of not being able to overcome their problems since the beginning of thepandemic.
With healthcare systems once again strained under the pressure of COVID-19 and thereintroduction of lockdowns across Europe, it is imperative that measures are taken tomitigate such impact. We hope that plans towards a European Health Union, due to beannounced by the European Commission today, will work to address the needs of people
living with a rare disease during and after the pandemic.
EURORDIS wishes to highlight, among its detailed list of recommendations issued during the firstwave of the pandemic:
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the need to safeguard the continuity of care and access to medical consultation for people
living with a rare disease by directing funds and efforts towards healthcare systems toreinforce medical workforce and equipment;
the adoption of concrete measures/ protocols warranted by the complex needs of raredisease patients in the provision of emergency healthcare;
the need for minimum support service and personal assistance service for vulnerable
populations, including people living with a rare disease;
Encourage and facilitate practices like virtual consultations (telemedicine) or theadministration of certain therapies in the home setting; andthe importance of waiving rare diseases patients, and parents and caregivers of raredisease patients (adult or child) from requirements to return to school, university or theoffice if/when remote learning and working is possible - as exposure to the virus puts themand their loved ones at greater unnecessary risk and they play a key role within the support
system of the patient.

The survey results also underline the need to move towards more resilient and shockresistant healthcare systems that do not exacerbate the vulnerabilities of people living witha rare disease across Europe as seen during the first wave of the pandemic, but works toprotect them.
Yann Le Cam, Chief Executive Officer, EURORDIS-Rare Diseases Europe commented:“People living with rare diseases in Europe have found themselves caught as collateral damage of theCOVID-19 pandemic, facing interruptions to their care that could be life-threatening. The risk of
exacerbating inequalities that already exist for these patients is very real.
The second wave of COVID-19 across Europe has made it clear we will now be living with thepandemic for a long period. That means that governments and healthcare systems have to moveaway from a fire-fighting approach, and work towards building more sustainable and resilient
healthcare systems that do not forget the needs of the most vulnerable in the cloud of COVID-19.
We need sustainable healthcare systems that leave no one behind – including the 30 million
people living with a rare disease in Europe.”###2/3

Additional key findings from the survey
Contact
Lara Chappell, Strategic Communications and Marketing Director, Head of Awareness, Public
Engagement and Events, EURORDIS-Rare Diseases Europe
lara.chappell@eurordis.org

About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 930 rare disease patientorganisations from 73 countries that work together to improve the lives of the 30 million people
living with a rare disease in Europe. By connecting patients, families and patient groups, as well
as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS
strengthens the patient voice and shapes research, policies and patient services.

About rare diseases
The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over6,000 different rare diseases have been identified to date affecting an estimated 30 million people
in Europe and 300 million worldwide. 72% of rare diseases are genetic whilst others are the resultof infections (bacterial or viral), allergies and environmental causes, or are degenerative andproliferative. 70% of those genetic rare diseases start in childhood.
Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, careofferings inadequate and research limited. Despite their great overall number, rare disease
patients are the orphans of health systems, often denied diagnosis, treatment and the benefitsof research.

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