9 in 10 people living with a rare disease experiencing
interruption in care because of COVID-19
Survey shows detrimental impact of coronavirus on rare diseasecommunity
4 May 2020, Paris - EURORDIS-Rare Diseases Europe today announces preliminary global resultsfrom the first multi-country survey on how COVID-19 is affecting people living with a rare disease,finding that the pandemic greatly hinders access to care.
The COVID-19 pandemic has exacerbated the many challenges people living with a rare disease
already face and has created extra risks in their daily lives, with collateral consequences.
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Since the beginning of the COVID-19 pandemic 9 in 10 are disease patients haveexperienced interruptions of the care they receive for their rare disease:o 6 in 10 of those who declared an interruption of care related to the COVID-19
pandemic said this is detrimental to their health or the health of the person theycare for.
o 3 in 10 perceive that these interruptions of care could definitely (1 in 10) or
probably (2 in 10) be life-threatening.
o More than a half of those who need surgery or transplant have seen theseinterventions cancelled or postponed.
o 8 in 10 have seen their appointments for rehabilitation therapies such as speech
and physical therapies (sometimes the only therapies accessible when treatments
are not available) postponed or cancelled.
Patients who usually receive care in hospitals are experiencing specific difficulties, withalmost 3 in 10 reporting that the hospital or unit that normally provides care for their raredisease is closed.
1 in 2 have participated in online consultations or another form of telemedicine since thestart of the pandemic. This is new for 2 in 10 patients. Almost 9 in 10 of those who haveexperienced this type of consultation are happy with the experience and that it has beenvery or fairly helpful.

5,000+ rare disease patients and their family members from all EU countries and beyond
representing 993 diseases responded to the survey carried out via the Rare Barometer
Programme. These results are based on survey responses submitted between 18 and 28 April
2020. These are preliminary figures and the survey continues throughout the duration of thecrisis. Rare diseases are often chronic and life-threatening.
Sandra Courbier, Social Research Director at EURORDIS, commented “It is clear the COVID19 pandemic has a collateral impact on the health and quality of life of the 30 million people
living with a rare disease in Europe, and indeed around the world. For years, EURORDIS has
been collecting data on the experiences of people of living with a rare disease that
demonstrates the immense difficulties they already have in accessing care, finding the right
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specialist and appropriate therapies. By creating new barriers, the current pandemic isworsening this already difficult situation. We are seeing cases where this triggers a strong
feeling of anxiety among families. We call on policy makers and public officials to remember
how vulnerable our community is and to make efforts, whenever possible in the postconfinement period; to be mindful of and protect people living with a rare disease”.
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Additional key findings of the survey:
Rare disease patients are experiencing interruptions of the care they receive for
their rare disease
Since the beginning of the COVID-19 pandemic, and for those who need the following aspects ofthe care provided by healthcare professionals:-Almost 6 in 10 do not have access to medical therapies at home or at the hospital
anymore, such as infusions, chemotherapy and hormonal treatment.
More than a half of those who need surgery or transplant saw their interventions cancelledor postponed.
More than 6 in 10 do not have access to diagnosis tests such blood or cardiac tests andmedical imaging - that are often crucial part of their daily care – anymore.
Close to 7 in 10 have seen their appointments with the general practitioners or specialists
who provide care for the rare disease cancelled.
Almost 6 in 10 have seen their psychiatry follow-up interrupted.

A female carer in Belgium commented, “For now, we no longer have a follow up with nephrology specialists
concerning the transplant. One meeting has been cancelled, the last blood test was in January even though there
should be one done every 2 months. Psychological and psychiatric follow-ups for ADHD and anxiety have beencancelled because there are no longer any consultations at the hospital and the private care is too expensive forme. I have a hyperactive son in the house 24 hours a day.”Patients treated in hospitals are experiencing specific difficulties
For patients who receive follow-up care in hospitals, getting access to the care they usually
receive is difficult because hospitals are obviously not in the same capacity to deliver thisnecessary care:-Almost 3 in 10 report that the hospital or unit that provides care for their rare disease isclosed.
More than one in then declare that the necessary material needed for the rare disease care
was missing because it is now used for patients affected by COVID-19.
And finally, more than 3 in 10 are even explicitly told not to go to a hospital if they or theperson they care for becomes unwell for other reasons than being affected by COVID-19.

The fear of catching COVID-19 is also a major obstacle to receiving the care they need in hospitals:
half of those who receive follow-up care through hospitals did not go to the hospital because they
were fearful themselves or the person they care for might catch COVID-19.
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These interruptions have a detrimental impact on their health
6 in 10 declare that interruptions of care related to the COVID-19 pandemic they are experiencing
are detrimental to their health or the health of the person they care for and 7 in 10 to their wellbeing.
Interruptions of care that are mentioned above, in particular surgery or transplant, cancellationof medical therapies or diagnosis test are perceived as life-threatening for a significant share ofpatients. 3 in 10 of the respondents declare that such interruptions related to the COVID-19
pandemic definitely (10%) or are perceived as probably (22%) having a life-threatening impact onthem or the person they care for.

Respondents are praising the additional effort made by their healthcare
professionals to provide care for their rare disease despite hurdles generated by theCOVID-19 pandemic
A female patient from the UK stated, “I have had to go to hospital to go to clinics and to receive Rituximab. Staff
have taken every possible measure to protect me. I know the staff and they have made every effort to help me”.

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About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 900 rare disease patientorganisations from 72 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 the Rare Barometer Programme
The Rare Barometer Programme is the EURORDIS survey initiative that brings together over
11,000 rare disease patients, family members and carers who share their experiences andopinions on the issues that matter to the rare disease community.
The Rare Barometer survey software enables high-quality, secure data collection and analysis.
The Programme was created to systematically collect patients’ opinions on transversal topics andintroduce them into the policy and decision-making process, transforming patients’ and families’
opinions and experiences into figures and facts that can be shared with a wider public andpolicymakers.

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 result of infections (bacterial or viral),allergies and environmental causes, or are degenerative and proliferative. 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.

Contacts
Eva Bearryman
Senior Communications Manager, EURORDIS-Rare Diseases Europe
eva.bearryman@eurordis.org
Sandra Courbier
Social Research Director, EURORDIS-Rare Diseases Europe
Sandra.courbier@eurordis.org

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