Survey highlights mental health burden among rare disease patients and families

pharmafile.com | November 5, 2026 | News story | |  Psychiatry, Rare Diseases, neurology, rare disease, survey 

Seven in 10 people affected by rare diseases, including patients and family members, report poor mental health, according to a UK survey by Rare Barometer, an initiative run by EURORDIS-Rare Diseases Europe.

The survey of almost 500 people found that nearly half experienced moderate to severe symptoms of depression, six times the rate reported in the general UK population. Severe feelings of isolation were also up to 20 times more common among respondents than in the general public.

The findings highlight the wider impact of rare conditions beyond their physical symptoms, including the psychological strain on families and carers. Long diagnostic journeys, complex medical needs and the challenges of living with often life-limiting conditions can all contribute to anxiety, depression and social isolation.

Dan Williams, Chief Executive Officer of SynaptixBio, which is developing a treatment for the rare neurological condition H-ABC, said the survey confirmed that many patients and families were not receiving professional psychological support.

“Rare genetic conditions are often life-limiting and medically complex, and can take years to diagnose. This adds tremendously to the mental burden patients and their families have to carry,” he said.

The results are consistent with an earlier Rare Diseases UK study, which found that more than 90% of respondents had experienced anxiety, stress or depression because of their condition.

Rare diseases affect around one in 17 people during their lifetime, equivalent to more than 3.5 million people in the UK. Only around 5% of rare diseases have an approved treatment, according to the release.

Pic: Joshua Hoehne