Looking back, moving forward: what it meant to finally be in the room
By Jane Speight and Elizabeth Holmes-Truscott
One month ago, more than 200 people from over 40 countries gathered in Jaipur, India with a shared mission. They came together for something that had never been done before: the first ever Global Summit to End Diabetes Stigma.
They shared hard stories, challenged harmful myths, showed why it matters, and how it can change. Then, they pushed for that change – in healthcare, schools, workplaces, and communities. We all honoured the courage that took and celebrated how it came about.
We are proud to have co-led the Summit, supported by an international Steering Committee and Summit Partners and Sponsors. The ACBRD was a Visionary Partner alongside Breakthrough T1D.
Over the past month, we have paused and reflected. What did that weekend mean? And what has it set in motion?
The power of global community
People living with all types of diabetes came from all over the world. They brought more than 1300 years of lived experience. Researchers, health professionals, leads of diabetes organisations, policy makers, and others joined them, sitting together in the same space. Voices that are too rarely heard in global health conversations had a seat, a microphone, and an audience that listened.
None of that happened by accident. It reflected a core value of our Steering Committee and of this movement: people living with diabetes must be at its heart. They always have been. They always must be. #NothingAboutUsWithoutUs.
This was made possible by our Summit Partners and Sponsors. Their collective support enabled #dedoc° to bring 85 people to Jaipur through travel grants. It was the largest gathering in #dedoco’s history. For some, it was their first international diabetes event. For many, it felt like a radical departure from anything they had attended before. The start of something entirely new.
People with lived experience emceed the whole event, chaired most, and participated in all, sessions and panels.
Linxi Mytkolli, a member of our Steering Committee and emcee, wrote: “The Summit created a space where people could speak openly about their experiences and where those experiences were taken seriously. That matters.”
What became clear across two days was that belonging was a powerful counterpoint to stigma. When people felt safe, they shared more, challenged more, and connected faster. That shift matters – because stigma depends on isolation.
Evidence, creative arts, and lived experience at work
The program is available here. Over 150 brief written or digital contributions were shared at the Global Summit. These included 52 lived experience storytelling pieces, 29 scientific evidence contributions, 37 impact reports, and 33 perspective pieces. The Summit began with an important session to create a shared understanding. Over the next two days, there were panel discussions on diabetes stigma across the world, #LanguageMatters, diabetes stigma in healthcare, community solutions, campaigns and communications, and human rights law. There were also workshops to enable everyone to move forward with stigma-free communications and to ensure everyone had identified their own key actions to take home.
Alongside evidence, creativity and expression were key to the Summit. We need novel approaches to address longstanding challenges. At the end of Day 1, there was a talent show and a fashion show. It was intended to bring some light relief amid heavy conversations. The aim was also to remind everyone, without slides or scripts, that people are so much more than their diagnoses. On Day 2, an interactive “pop-up” exhibition showcased the power of creative approaches to addressing diabetes stigma. Ten exhibitors showed innovative and arts-based approaches. Contributions ranged from family card games and cartoon-based science communication to dance and AI-informed solutions to #LanguageMatters.
In addition to bringing people to the Summit, #dedoc° brought sunflowers! The silent auction of the Path to End Diabetes Stigma, by #dedoc° Artist in Residence, Taylor “Appleton” Lawrence raised awareness across the world. And the sunflower street art that Appleton placed carefully around Jaipur raised more awareness locally, while also allowing those who couldn’t be in Jaipur to “sign a petal” to take part.
What people have shared about the Summit
In the weeks since the Summit, attendees have shared their thoughts on social media, under the hashtags #EndDiabetesStigma and #SupportNotStigma. The same themes keep coming up.
Many write about the joy of finally meeting in person people they had only known online. For a movement built largely in digital spaces, those moments felt profound.
Anant Goswami wrote: “I found myself deeply enriched by the brilliance and perspectives of the global guests I met. The conversations were more than just networking; they were a masterclass in empathy and collective action”.
People shared the need to move from naming the problem to fixing it, and wrote about leaving with fresh energy and clear plans, “with sharper intent”. Rwothomio Hadison wrote: “It’s been 2 weeks… and I just realised I never shared how powerful that experience was. Not because it wasn’t worth sharing but because I’ve been out here living it… a renewed responsibility to advocate, educate, and challenge stigma wherever it shows up”.
A powerful image appeared in several posts. Mridula Kapil Bhargava wrote that, like air pollution, stigma causes real harm to health. But unlike air pollution, we do not yet measure it with the same care or urgency. That gap, many have said, must close. Patrick Ngassa Piotie’s advocated for a diabetes stigma index. The brilliance of the Summit was that Janine Gaudin turned his words into an impactful illustration.
Glucose Toujours captured the vibe in this brief video.
The ACBRD team reflected: “[We] had a fantastic weekend – showing up, taking a stand, being vulnerable, sharing evidence, strengthening relationships, listening to stories, exploring next steps, empowering and being empowered to #EndDiabetesStigma.” More reflections from ACBRD attendees will be shared soon.
A movement that keeps growing
Among those in the room was Princess Padmaja Kumari Parmar of the House of Mewar, who has lived with type 1 diabetes since the age of five. Welcoming everyone to Jaipur, she put it plainly: “After forty years, we deserve freedom from stigma. Anything less is unacceptable.” Her words captured what so many in the room have carried for decades.
The Summit was not the start of anything. It was the next step after the Pledge, after the international consensus, after years of research and decades of advocacy. It brought the global community together to share knowledge and skills, build connections, and commit to action.
It also showed something that gives us real hope. More and more researchers, health professionals, advocates, policy makers and organisations now see stigma for what it truly is. Not a side issue. Not something soft. Not something hard to measure. A real and serious barrier to health, clinical care, fairness, and opportunity for everyone living with any type of diabetes.
Once you’ve seen what the power of global, community-led, collective action looks like, you can’t unsee it.
What happens next
The ideas and bonds formed in Jaipur extend well beyond the Summit. They are already shaping a global roadmap, with the steps needed to turn shared values into #SupportNotStigma: embedding lived experience into policy and governance, benchmarking diabetes stigma, and collective international actions.
One month on, our hope is the same as it was on the first morning. A future free from blame, shame, judgement, and discrimination. A future where every person with diabetes is met with respect, care, and support. There is a long way to go but that hope is more tangible now than it was a month ago.
Thank you to everyone who made this Summit possible. On behalf of the Steering Committee, we thank everyone who showed up. Thank you for the journey you made to be there. Your presence said everything. Thank you to all who carry this work forward, every single day. The movement is stronger because of you.
Funding: The Global Summit to End Diabetes Stigma was made possible by Visionary Partners, the ACBRD and Breakthrough T1D and by numerous other Partners and Sponsors who believed in that vision and came together to make it a reality. They are all shown here.
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