Insights

: 08 April 2025

Patients' Rights

Cittadinanzattiva-Active Citizenship Network and the Italian Federation of Incontinent and Stomised Associations (FAIS) have launched a European-wide initiative, with the unconditional support of Coloplast, for the recognition of the rights of people with ostomy. New civic recommendations have been presented. Many people live with invisible health conditions: no topic should be taboo, especially when it comes to individual health.

Around 700,000 people in Europe live with an ostomy, a small pouch attached to the outside of the body to collect waste. It sounds simple, but it's not. There is a lack of training and specialised health workers to provide the short and long-term care these people need to cope with their new reality. Many feel forgotten. They withdraw from daily life. In some cases, they are too afraid to leave their homes for fear of accidents or ridicule.

Another factor is cost. There is no one-size-fits-all solution and the body changes over time.

The ostomy products and the necessary accessories are medical devices, which in some Member States are classified as cosmetics, making reimbursement difficult.

The policy dialogue event, held at the European Parliament on 26 March 2025, was also one of the very first Europe-wide discussions on ostomy, where ‘(IN)VISIBLE’, the first EU ostomy awareness campaign, was also presented.

Organized by Active Citizenship Network and endorsed by the MEPs Interest Group "European Patients' Rights & Cross-Border Healthcare, the event was part of the EU multi-annual project “Overcoming new challenges for advocacy of people with intimate health conditions in Europe”.

Thanks to all the participants, patient groups, stoma patients and health policy experts. Special thanks to MEP Stefano Bonaccini, who hosted us, and MEP Letizia Moratti for her presence, the sensitivity she demonstrated and the commitments she made.

Living with an ostomy: from invisible struggles to visible change

26 March 2025 | 15:45-17:15

Room A5G305 | European Parliament, Brussels

PROGRAMME
Click on the names to read the speeches and download the presentations

Moderator: Mariam Zaidi, journalist

15:45 – 15:55 Opening remarks

MEP Stefano Bonaccini (S&D group), Italy
MEP Letizia Moratti (EPP group), Italy
Mariano Votta, Director - Active Citizenship Network-Cittadinanzattiva

15:55 – 16:25 Overview on ostomy at EU level:

Let’s talk ostomy! Nurses’ perspective on the needs and challenges of ostomates

Klaus Zobel, Deputy Chairman of the Board - Stoma, Continence and Wound Specialist Association (FgSKW), Germany

Living with a stoma in the EU: focus on Poland, Spain, Italy, Germany

Agnieszka Siedlarska, STOMAlife Foundation, Poland
Inés Aulló Pérez, Spanish Association for patients Affected by Familial Adenomatous Polyposis (AEAPAF) & Spanish Federation of Associations of Ostomised Patients (FAPOE), Spain
Pier Raffaele Spena, President - Federation of Incontinent and Ostomised Associations (FAIS), Italy
Maria Haß, German Association of Ostomates and People with Colorectal Cancer (Deutsche ILCO e.V.), Germany

16:25 – 16:35 Key messages

(IN)VISIBLE: The first EU awareness campaign on ostomy

Mattia Zucca, Head of Healthcare Strategy, Market Access & Communication - MCO international group
Gaya Cuppone, testimonial of the (IN)VISIBLE communication campaign

16:35 – 17:10 From everyday experiences to EU recommendations: multistakeholder roundtable discussion and conclusions

Representatives from the EU institutions and PAGs together with:

Pier Raffaele Spena, President - Federation of Incontinent and Ostomised Associations (FAIS), Italy
Ida Züricho, Senior Public Affairs Manager, Global Government Affairs & Patient Advocacy – Coloplast A/S
Lieve Wierinck, Chair - Digestive Cancers Europe (DiCE) and former Member of the European Parliament

17:10 – 17:15 Final remarks