A United Voice for Equity and Dignity in Intimate Health
About Us
How does it feel to live with a health condition that is largely invisible to others?
Invisible is a community bringing together patient advocates and other stakeholders committed to improving the lives of people living with intimate health conditions.
Together, we represent voices from across countries and healthcare systems. We work to promote dignity, equity and inclusion, enabling people with invisible health conditions to participate fully in society.
Our work is grounded in lived experience and informed by the realities people face every day. By sharing insights, challenges and practical solutions, we contribute to policy discussions and help drive meaningful change.
We believe that health challenges should never mean exclusion. With the right support, access to care and patient-centred policies, people can remain active in their communities, families and working lives.
Our mission and priorities
We advocate for policies that enable dignity, confidence and full participation in society for people living with intimate health conditions.
Quality of Life in Healthcare Decisions
Healthcare decisions, including coverage and procurement decisions, should consider quality of life alongside cost and clinical outcomes, helping people access the support and solutions that best meet their needs from the start.
Access and Freedom
of Choice
Everyone should have access to care, support and solutions that fit their individual needs, medical circumstances and daily lives, decided jointly with healthcare professionals through shared decision-making.
Patient Voice
in Policy
Patient perspectives should be systematically included in healthcare decision-making at all levels.
POLICY RECOMMENDATIONS
Our first policy recommendations focus on stoma care, reflecting the community’s initial area of work. Developed through the collective perspectives and experiences of community members, the recommendations highlight opportunities to strengthen quality of life, access to care and support, and patient involvement in healthcare decision-making.
COMMUNITY VOICES
People living with intimate health conditions, along with those who support and care for them, bring valuable perspectives on the challenges and opportunities they encounter in everyday life. Their experiences help raise awareness, inform our work, and strengthen the case for policies that support dignity, inclusion and full participation in society.
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.
MILESTONES
A roundtable discussion at the European Parliament bringing patient advocacy groups and policymakers together to exchange perspectives on challenges related to ostomy care across Europe.
Europe‑wide, patient‑led awareness campaign focused on everyday life with a stoma and the need for dignity and inclusion.
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.
Invisible contributed patient insights to the European Commission’s public consultation on strengthening the EU Disability Rights Strategy towards 2030.
Invisible met with representatives from the European Commission's Director-Generals for Public Health (DG SANTE) and Justice (DG JUST). Discussions focused on the link between intimate health care needs and the revision of the EU's Disability Strategy, which was finally published on 6 May.
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.
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.
E-mail address
secretariat@weareinvisible.org
More than just a logo: a reflection of our identity.
