A United Voice for Equity and Dignity in Intimate Health
About Us
How does being invisible feel in a world that celebrates appearance and visibility?
Invisible is a collaborative community uniting multiple stakeholders committed to improve the lives of people living with intimate health conditions.
We represent voices from across European countries. Together, we work to promote dignity, equity, and inclusion, to enable people with invisible health conditions to participate fully in society.
We believe that health challenges should never mean exclusion. Too often, these people are held back by unintended barriers created by gaps in knowledge. With the right support and solutions, people can stay in the workforce, care for their families, and live fulfilling lives.
Our work is grounded in real experiences. We share insights, challenges, and practical solutions to turn stigma into understanding and drive meaningful change.
Our mission
A collaborative community
We are committed to fostering inclusive and collaborative endeavours in matters of public health and social equity. Our community amplifies the often-unheard voices of individuals affected by intimate health conditionsWe advocate for policies that enable dignity, confidence, and full participation in society. Our priorities are:
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Quality of Life in Coverage Decisions
Coverage and procurement procedures must prioritise quality of life over cost-focused criteria. Setting a strong foundation for patients to receive the right solutions from the start. -
Access and Freedom of Choice
Everyone should have access to solutions that fit their individual and medical needs, decided jointly with healthcare professionals through shared decision-making. -
Patient Voice in Policy
Ensuring patient perspectives are systematically included in healthcare decision-making at all levels.
Updates from the Community
As inequalities and common challenges for persons with disabilities remain in the EU, the European Commission is looking to strengthen its efforts in a second phase of their Strategy for the Rights of Persons with Disabilities 2021-2030.
To do so, the European Commission is seeking input via its public consultation on an upcoming Communication on Enhancing the strategy for the rights of persons with disabilities up to 2030.
Greater EU recognition of ostomy as an invisible disability/condition to better tackle limited patient involvement in political, economic and medical decision-making.
Directly addressing the economic and labour impact of “invisible” conditions, such as ostomies, to improve working conditions and remote work options for those with disabilities, thereby enhancing the EU’s workforce and competitiveness.
Guaranteeing equal access and security of necessary medical supplies of ostomy patients to ensure physical and mental wellbeing.
Testimonials
Community's voice
Individuals navigating intimate health conditions that are rarely discussed, often misunderstood, and too frequently dismissed. Each voice helps build a mosaic of resilience. Together, these testimonials form our community, not visible in the traditional sense, but active, vibrant, and deeply human.
To an ostomate, a medical device is not a commodity—it is the foundation of dignity and freedom. The free choice of medical devices by individuals and the right to have access to specific devices that guarantee quality of life is non-negotiable and must never be compromised by administrative regulations. A seat at the table where healthcare decisions are made enables us to enforce a fundamental principle: patient wellbeing must not be subordinated to the mechanics of public tenders. For that, Invisible provides us a platform to share experiences between organisations beyond national borders and gain knowledge of best practices.
Collaborating with more than 14 European patient associations and organisations working together on stoma care and invisible intimate health challenges has clearly demonstrated the value of involving patient organisations in policymaking. It has reinforced my belief that these collaborations are essential to ensure that legislation and healthcare strategies are grounded in real-life needs, not only clinical or economic considerations. Patient organisations bring lived experience, continuity and practical insight that strengthen the design, implementation and evaluation of EU health policies. This ultimately leads to more inclusive, effective and sustainable policies across Europe.
From the perspective of a patient organization, Invisible plays a vital role in making stoma care needs visible, understood and respected. The platform empowers patients by giving them a voice and by challenging stereotypes that still affect everyday life and access to care. Such advocacy is essential for improving awareness, shaping better services and supporting people with invisible care needs to live full, dignified lives.
HIGHLIGHTS
Past events
MILESTONES
This position paper is a collaborative document developed by multiple patient associations representing the following European countries: Italy, Spain, Germany, Poland, Denmark, Bulgaria, Croatia, Romania, Greece, The Netherlands, Czech Republic, Portugal, Malta and Cyprus.
The policy dialogue event, held at the European Parliament, was also one of the very first Europe-wide discussions on ostomy, where (In)Visible, the first EU ostomy awareness campaign, was also presented.
Invisible organised a workshop for NGOs on how to improve their advocacy efforts. Participants received strategic insight from former MEP & Latvian Prime Minister Krišjānis Kariņš, and a presentation from Mary Lynne Van Poelgeest-Pomfret of the World Federation of Incontinence and Pelvic Problems.
By directly addressing the economic challenges of invisible conditions through improved working environments and remote work flexibility, the EU can foster a more competitive and inclusive workforce. The Commission must guarantee equal access and a secure supply of essential medical materials to safeguard the physical and mental well-being of all ostomy patients.
Campaigns
European Ostomy Awareness Campaign
Living with an ostomy: from invisible struggles to visible change.
In Europe, an estimated 700.000 people live with an ostomy, a figure that is expected to grow due to an ageing population and the increasing prevalence of colorectal diseases yet remains a relatively obscure condition.
In Spring 2025, Invisible launched a social media awareness campaign on Instagram, LinkedIn, and Facebook across six EU countries by uploading a sequence of nine posts highlighting how those living with an ostomy bag can live productive and full lives. The results of the campaign were presented to in the European Parliament and coincided with the launch of Invisible’s policy book.
GET INVOLVED
Current Members
We always welcome new members who share our mission. To join the Invisible community, simply complete the form and connect with us.
Contact us
Let's get in touch
Want to learn more or get involved?
We’d love to hear from you.
More than just a logo: a reflection of our values
