EURORDIS Mental Health Survey- Cystic Fibrosis Psychological Support Groups

Mental health is an integral part of the holistic care of patients with cystic fibrosis and, more broadly, those with rare diseases.

The new European Rare Barometer survey by EURORDIS , the European Organization for Rare Diseases — Rare Diseases Europe — was published in June 2026 and strongly highlights the significant mental health burden experienced by people with rare or undiagnosed diseases and their families, as well as the urgent need for meaningful psychological support.

Findings from the European Mental Health Survey

The survey was conducted from September 11 to December 14, 2025, and is the largest European survey on this topic. A total of 9,897 people from 45 European countries with 1,657 different rare diseases participated . The European survey revealed that:

70% of patients with rare diseases and their families report mental health problems.
73% said they needed professional psychological support in the past six months, but only about half were able to receive it.
70% of participants reported receiving support from their community, such as from family, friends, organizations, and patient associations.

These findings confirm that mental health must be a key pillar of care for patients with rare diseases. At the same time, they highlight the crucial role played by patient organizations and the community itself in providing psychosocial support, mutual support, and the empowerment of patients and their families.

There are only a few days left to join the free psychological support groups

The need highlighted by the new European study confirms the importance of psychological support for patients with cystic fibrosis and their families.

The Panhellenic Cystic Fibrosis Association reminds participants that registration for the new cycle of free online psychological support groups closes on Sunday, July 19, 2026.

The new groups begin on Saturday, September 19, 2026, and are intended for adult patients with cystic fibrosis, adult transplant recipients or patients on the waiting list for a lung transplant, and caregivers of people with cystic fibrosis (parents, family members, partners, friends, etc.).

The groups are designed to offer participants:

✔ Building mental resilience and providing practical toolsfor managing the daily challenges of living with cystic fibrosis.
✔ A safe and accepting environment where patients and caregivers can share experiences with people who truly understand the difficulties of cystic fibrosis.
✔ Free support from experienced psychologists, as part of a scientific clinical study.
✔ The opportunity to contribute to scientific knowledge about mental health in cystic fibrosis, helping to improve community support services in the future.

Participation is free, takes place online from anywhere in Greece, and includes 13 weekly sessions over a period of approximately 3 months.

The clinical trial will conclude in 2027, and only the last three enrollment cycles remain, making this current call for participants one of the last opportunities for patients and caregivers to join the research program.

➡️ Learn more about the psychological support group program: cysticfibrosis.gr/neos-kyklos-dorean-network-of-psychological-support-groups-for-patients-with-cystic-fibrosis-frontistes/

The “Unlimited Breath” Psychosocial Support Program

Since 2020, the Panhellenic Cystic Fibrosis Association has been running the psychosocial support program “Unlimited Breath, ” a comprehensive network of free support services for the cystic fibrosis community in Greece.

Our goal is to ensure that no person with cystic fibrosis and no family in Greece feels alone in facing the challenges of the disease.

The program includes:

Online psychological support groups for patients and caregivers, which have been in operation since 2022 under the volunteer coordination of Dr. Dipl.-Psych. Stavroula Rakitzis, and are currently continuing as part of a scientific clinical study in collaboration with psychologist Irini Pavlidi.
Online Coffee Breaks, community gatherings that provide information, opportunities to share experiences, and peer support.
A private Facebook group for members to communicate with one another, which fosters daily communication, the sharing of experiences, and mutual support among community members.
The Cystic Fibrosis Helpline, the first and only specialized support hotline for cystic fibrosis in Greece.

➡️ More information about the “Unlimited Breath” program: cysticfibrosis.gr/draseis/programma-psychokoinonikis-ypostirixis-aperioristi-anasa/

A program with international scientific recognition

The clinical study is a continuation of the online psychological support group programme, which has been implemented through the longstanding voluntary commitment of Dr. Dipl.-Psych. Stavroula Rakitzi, Principal Investigator of the study, in collaboration with psychologist Eirini Pavlidi.

The Panhellenic Cystic Fibrosis Association extends its heartfelt thanks to both psychologists for their invaluable volunteer work on behalf of the cystic fibrosis community.

Ms. Rakitzi presents the program’s results each year at the Panhellenic Cystic Fibrosis Conference, and they have been published in the international scientific journal *Journal of Rational-Emotive & Cognitive-Behavior Therapy, constituting significant international recognition of the Association’s initiative and the contribution of the cystic fibrosis community to the advancement of scientific knowledge.

Rakitzi, S., Spinou, A. & Giannaki, K. The Effectiveness of an Online Group Cognitive Behavioral Psychotherapy in Hellenic Cystic Fibrosis Association in Patients and Caregivers.J Rat-Emo Cognitive-Behav Ther 43, 50 (2025)

➡️ View the article in the scientific journal: doi.org/10.1007/s10942-025-00611-3