18 June 2026, Paris – EURORDIS-Rare Diseases Europe has released findings from its latest Rare Barometer survey showing that seven in ten (68%) people living with a rare disease and their family members report poor mental health, with levels of distress comparable to those seen during the COVID-19 pandemic and in highly vulnerable populations.

The survey, the largest of its kind on this topic, finds severe and widespread unmet needs for psychological support, and calls for mental health to be recognised as a core component of rare disease care and policy across Europe.

Conducted between 11 September and 14 December 2025, the survey gathered responses from 9,897 individuals across 45 European countries, representing 1,657 rare diseases.

Jessie Dubief, Social Research Director at EURORDIS and lead of the Rare Barometer programme, said:

“These findings lay bare the scale of a mental health crisis afflicting Europe’s rare disease community. This is a crisis that has for too long gone unrecognised and under-addressed. But now we are releasing the most comprehensive data and analysis yet, equipping policymakers, healthcare systems, and society at large with the knowledge they require to address this acute problem with bespoke and well-informed solutions.

“Seven in ten people living with a rare disease or caring for someone who does report poor mental health. These are figures that rival those seen in populations experiencing acute psychiatric crises or living through a pandemic. What makes this especially alarming is that these are not temporary conditions: this is the daily reality for millions of people across Europe, year after year. And yet nearly three quarters of those who needed professional psychological support in the past six months did not receive it.

“The evidence is unambiguous: mental health must be placed at the heart of rare disease care.”

Jean Saslawsky, Chief Executive Officer of EURORDIS, said:

“Behind every percentage point in this survey is an individual or family trying to persevere through unmet needs. Depression, anxiety and loneliness are a daily reality for millions of people across Europe living with a rare disease.

“We know what needs to be done: rare disease care must be mental health-informed at every stage. Everyone involved in the care pathway should recognise and respond to the psychological impact of living with a rare disease. When specialist mental health support is needed, it should be accessible and reimbursed. We also ask that people living with rare diseases be recognised as a vulnerable population in mental health strategies across Europe.

“Waiting for people living with rare diseases to seek help is not enough. Care systems must proactively recognise the mental health challenges facing our community and make it easier to find and access the right support. The time to deliver this is now.”

Key findings from the survey

1. Seven in ten people living with a rare disease and their families report poor mental health

The survey assessed mental health using validated tools: depressive symptoms (PHQ-8), anxiety symptoms (GAD-2), loneliness (UCLA scale), and suicidal ideation over the past six months. Seven in ten (68%) participants reported difficulties on at least one measure. Levels of mental health difficulty were comparable to those observed during the COVID-19 pandemic, in Ugandan HIV cohorts, in psychiatric hospital settings, and among people with severe mental disorders.

Among the specific findings:

• 44% report moderate to severe depressive symptoms, seven times the rate in the EU general population (6.1%)
• 42% report clinically significant anxiety symptoms, seven times the EU rate (5.4%)
• 45% feel lonely, four to twenty times the EU rate (2–10%)
• 31% had suicidal thoughts in the previous six months, five to ten times the EU rate (3–6%)

“My symptoms, severe insomnia and feeling of suffocation, prevent me from leading a normal life: working, socialising, and even studying are difficult. They greatly affect my daily life and, altogether, cause anxiety and depression,” said one survey respondent living with a rare disease in Italy.

2. Many face multiple simultaneous difficulties

Mental health difficulties rarely occur in isolation. Among all participants, 47% reported at least two of the four difficulties measured, 28% reported at least three, and 12% reported all four.

Among people living with a rare disease specifically, two in three (67%) report poor mental health. Those who are younger or who developed symptoms during childhood face elevated risk: 78% of those aged 30 or under report poor mental health, as do 71% of those who were minors when their first symptoms appeared, a significant finding given that 70% of rare diseases have a paediatric onset.

Similarly, 71% of parents of people living with a rare disease report poor mental health, with more than half (52%) experiencing clinically significant anxiety symptoms and feeling lonely.

3. Most people do not receive the professional psychological support they need

Despite the scale of need, access to professional support is severely limited. While nearly three in four (73%) participants reported needing professional psychological support in the past six months, only around half (49%) received it.

Among those who needed support but did not receive it, the unmet need was highest for Centres of Expertise (74% participants did not receive support from in the past six months despite needing it), reimbursed mental health professionals (70%), non-reimbursed mental health professionals (64%), and general practitioners or nurses (55%). Yet when professional support was accessed, its impact was clear: 72% of those who received it said it helped them better manage daily life, and 62% said it helped them live better with their condition’s symptoms.

“In reality, I did not receive any emotional support,” responded one person living with a rare disease in France. “I was never properly informed about my condition or what could be done to improve the situation. What affected me most, and was hardest to accept, was being told that my condition is chronic with no real cure, only stabilisation.”

4. Financial and logistical barriers compound the problem

More than half (55%) of participants reported barriers to accessing professional psychological support. The most commonly cited obstacles were logistical, including cost, distance, waiting lists, or unavailability of professionals (27%), followed by not knowing how to access support (20%) and not feeling ready to seek help (19%).

For those who did access support, the financial burden was significant: 64% said professional psychological support represented a financial burden for their household. This adds to an already heavier-than-average cost of living with a rare disease: prescribed medicines are a heavy financial burden for 23% of the rare disease community (twice the EU rate), and medical examinations for 20% (1.5 times the EU rate).

“There are many situations I do not know how to handle,” responded the parent of someone living with a rare disease in the Czech Republic. “Caring for my daughter every day, I often feel extremely tired and exhausted, and I have lost friends and social contacts.”

About EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 76 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease 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 services.   

About EURORDIS Rare Barometer

Rare Barometer is the survey programme run independently by EURORDIS-Rare Diseases Europe and is a not-for-profit initiative. It conducts regular studies to identify the perspectives and needs of the rare disease community in order to be their voice within European and international initiatives and policy developments. Rare Barometer brings together a panel of more than 25,000 people living with a rare disease or family members to make the voice of the rare disease community stronger.

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