On 25 and 26 September 2026, Dr. Alekszandra Rokvity led the international online workshop Inclusive Voices in Endometriosis: A Collaborative Workshop for Content Creators. The workshop brought together endometriosis content creators from the United Kingdom, the United States, Austria, Hungary, Bulgaria, Greece, and South Africa, to exchange experiences and reflect on the challenges and inequalities shaping digital endometriosis spaces.
The workshop explored how social media shapes the visibility and recognition of different experiences and forms of knowledge related to endometriosis. Discussions addressed accessibility and representation, algorithmic bias, the realities of creating health-related content online, and the unpaid, emotional, and epistemic labor of patient-content creators. The program combined facilitated discussions, collaborative exercises, and think-tank sessions.
Three guest speakers contributed to the workshop: Emma Shapiro spoke about digital representations of gendered bodies and algorithmic bias; Hannah Parle addressed the connection between ADHD and endometriosis; and Neelam Heera-Shergill discussed racial bias in endometriosis care and representation. These contributions provided participants with different perspectives on how digital platforms, health systems, and wider social structures shape whose experiences and knowledge become visible and recognized.
The workshop is part of the ongoing project at CIRAC, ENDO//CONNECT: Disability, Endo Violence, and Inclusive Digital Care, led by Dr. Rokvity and funded by the University of Leeds as part of the INCLUDE+ Inclusive Digital Economy Network. Earlier in September, Dr. Rokvity also represented ENDO//CONNECT at the Digital Equity IN+ Practice: Co-creating What Comes Next event in Leeds. The event brought together projects working on digital equity to reflect on co-creation, lived experience, and the future of inclusive digital practices.
The project also welcomed student assistant Cassey Abella, who will be working on the design of the digital report resulting from the workshop. The report will bring together the knowledge and experiences generated through the workshop and make its outcomes accessible to a wider audience.
