10/10/2026
🧠 It's World Mental Health Day! 📊 According to the EURORDIS-Rare Diseases Europe Rare Barometer mental health survey results:
❗️ Seven in ten people living with rare diseases and their families report poor mental health. For the uro-recto-genital rare disease/condition community, this is the same: 7/10.
❗️ Half of people living with rare diseases received no emotional or psychological support at diagnosis. For the uro-recto-genital rare disease/condition community, this is essentially the same: 49%
❗️55% of people living with rare diseases report barriers to accessing professional psychological support. For the uro-recto-genital rare disease/condition community, this struggle is even greater: 65%.
These findings reinforce what many in our community have long said in other contexts: rare disease care *must* include psychological support, not treat it as an optional extra.
EURORDIS is calling for EU health policy to formally recognise the 30 million people living with a rare disease in Europe as a vulnerable population, and for health professionals to receive more training in the realities of rare conditions.
We will look at how these results can inform our guidelines and training, and how centres of expertise across the network can better connect patients with mental health professionals who understand the specific challenges of rare uro-recto-genital conditions.
➡️ Read more here: https://eurogen-ern.eu/ern-eurogen-rare-barometer-mental-health-survey-results/
💬 If you are struggling, you can talk to someone anonymously by phone or chat in your country: befrienders.org
European Commission Jardin Joint Action European Association of Urology European Association of Urology Nurses (EAUN) ESPU - European Society for Paediatric Urology ESPU-Nurses International Federation for Spina Bifida and Hydrocephalus International Continence Society (ICS) Aici - Associazione Italiana Cistite Interstiziale AIMAR - Associazione Italiana Malformazioni Anorettali Klinefelter's Syndrome Association Orchid - Fighting Male Cancer
