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 endeavors in matters of public health and social equity. Our community amplifies the often-unheard voices of individuals affected by intimate health conditions, an invisible community, repeatedly overlooked in both policy and care.
By raising awareness, and mobilising out collective resources, we will work alongside policymakers, healthcare professionals across the healthcare sector to promote systemic change, improve access to care and uphold the rights of every individual, seen and unseen.
To this end, and to enable ostomates to participate in society as equal citizens, we call upon the different EU institutions and Member States to:
- Guarantee the availability of a broad range of stoma care solutions that enable self-management and daily life without financial strain.
- Systematically include quality-of-life criteria in procurement and reimbursement procedures, with medical devices for stoma care treated separately from medicines.
- Structure and consistently include patient associations in healthcare decision-making.
Because bodies differ and change over time, ostomates need a real choice of tailored solutions that prevent complications and reduce hospital visits, with procurement and reimbursement systems that prioritise quality of life and do not treat medical devices like medicines. At the same time, low awareness and stigma mean decisions are often taken about ostomates without them, making the systematic involvement of patient associations essential to ensure policies reflect lived experience.
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
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. People living with an ostomy in Europe face significant challenges that affect their quality of life, health outcomes and social inclusion. Despite progress in medical technology and care, these people often face barriers in accessing consistent, high-quality medical support, adequate financial assistance and widespread public understanding. Furthermore, institutional information on ostomy care is inadequate in many European countries. In fact, there are no public awareness or information campaigns for ostomised persons and their caregivers. In this context, patient associations play a fundamental advocacy role in order to be part of the decision-making processes aimed at improving the quality of life of ostomised people.
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
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More than just a logo: a reflection of our values
