Please read the Newsletter of NAFC with some very interesting articles and listen to their podcast series.

Dear Rare Barometer participants, You were recently invited to tell us how your rare disease impacts your everyday life. If you have not yet responded, please click here to answer this short survey. It should take no more than 20 minutes to complete and closes on 8 September 2024. This survey is open to people living with a rare disease […]

Please watch this animated video about Shared Decision Making

The following recordings are now available online: Webinar Shared Decision Making (SDM) and the 4 C’s Project Webinar Stigma and taboo from a cultural point of view Webinar Continence Thematic Innovation Ecosystem – Continence and Mental Health Webinar SINUG World Continence Week 2024 Please click here to watch them all.

Please listen to the Karger’s The Waiting Room Podcast with Mary Lynne Van Poelgeest-Pomfret,  President of WFIPP. Points of discussion were incontinence/leakage and pelvic problems, the aspect of quality of life, stigma and mental health, as well as the upcoming World Continence Week, which is held from June 17–23, 2024.

Research shows that incontinence care is one of the most challenging aspects of caring for someone, and can be a catalyst in an unwanted move to a care home or supported living facility.

On behalf of the WFIPP Executive Council, we are delighted to welcome the Australia and New Zealand Urological Nurses Society (ANZUNS) as a new member! We are thrilled to have them on board and look forward to working together to make a positive impact on our community and achieving great things together.

Some very interesting articles in this month’s newletter of the National Association for Continence (NAFC)

Ahead of the 2024 European Elections, the European Patients’ Forum has launched its #Vote4Patients Campaign, grounded in 10 basic principles to improve patient involvement in the EU. 

At WFIPP, we strive for a healthcare system where patients actively provide insights into their needs and contribute to decision-making.

PRESS RELEASE The draft text of the European Health Data Space (EHDS) in trilogues sparks deep concerns in the European healthcare ecosystem (26 February 2024) 35 large health stakeholder organisations representing patients, health professionals, researchers and  industrial actors in the healthcare ecosystem at both European Union (EU) and Member State level are expressing their shared […]

On behalf of the WFIPP Executive Council, we are delighted to welcome Adopec Chronic Pelvic Pain Association as a new member! We are thrilled to have them on board and look forward to working together to make a positive impact on our community and achieving great things together.

The European Health Data Space (EHDS) is a proposal for a regulation from the European Commission. This regulation complements the GDPR and makes it possible to share health data on a national and European level for primary and secondary use. Please see below the statement endorsed by key stakeholder organizations representing patients, healthcare professionals, researchers and industrial partners with regard to legislative refinement of the EHDS as published on 4th December 2023.

BASEL, Switzerland, Nov. 16, 2023: Versameb AG (“Versameb”), a pre-clinical stage company focused on  transforming RNA therapeutics to treat unmet medical needs, today announced that the U.S. Food and  Drug Administration (FDA) has cleared its Investigational New Drug (IND) application of VMB-100, a potency enhanced messenger ribonucleic acid (mRNA) encoding human insulin-like growth factor-1 (IGF […]

If you struggle with bladder leaks during normal daily activities like coughing, sneezing, or during physical activity, you may be a candidate for Bulkamid.
Bulkamid is a minimally invasive and long-lasting treatment option for bladder leaks caused by Stress Urinary Incontinence (SUI).
When given the choice of treatment options for SUI, the majority of women choose Bulkamid.

The Commitment to Collaboration in Continence Care (4Cs) multistakeholder group met in Valencia on 10 November 2023. The meeting objectives were to: a) review progress made in 2023, and b) agree priorities for 2024, aligned with the 4Cs objectives. Discussion focused on maintaining momentum from the 1st EU Continence Health Summit “An Urge to Act”, which was held on 8 November in Brussels, Belgium.

The European Institute for Women’s Health issued its 2024 EU Manifesto for Women’s Health! The document outlines the need for action on women’s health and provides key facts and figures on the current state of play for women in the EU. It describes the key priorities for improving the health and wellbeing of women across the […]