On 17 November 2023, Cittadinanzattiva-Active Citizenship Network organized in Brussels a European training seminar - attended by people from 13 countries - on the topic of intimate health conditions (incontinence, stomia, etc.) addressed to representatives and leaders of Patients Advocacy Groups (PAGs) working at local, national and European level for the protection of patients' rights.

As part of the European project “Overcoming new challenges for advocacy of people with intimate health conditions in Europe”, promoted by ActiveCitizenshipNetwork and F.A.I.S.-Federation of Incontinent and Ostomised Associations - with the unconditional support of Coloplast - the initiative’s main objective was to build an informal network of patient associations trained to become educators in their communities, to improve the dissemination of messages aimed at protecting individual and public health, to fight stigma, make the invisible visible and reduce health inequalities across Europe.

With this purpose, a common set of updated information was provided and experiences were shared, building an informal network of patient associations that were trained to become educators in their own communities, to improve the uptake of messages aimed at individual and public health protection, to fight stigma, make the invisible visible and reduce health inequalities across Europe.

Among others, some of the points that emerged from the discussion were:

• Lack of data on the number of people living with ostomies. It is increasingly necessary to make the invisible visible to policy makers and the media/public.
• Large disparities between European countries in terms of reimbursement/access to solutions adapted to individual needs.
• Patients are often not included in decision-making processes.
• People living with an intimate health condition are citizens who can (and would) contribute meaningfully to society but, to make this possible, it is crucial that their individual needs are met and respected, as they are considered an integral part of society.

To read the programme of the seminar and download the presentations, click here

To download the participants' list, click here

To watch the photo gallery on Active Citizenship Network’s LinkedIn page, click here