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Voices of the community

How do we identify what people with diabetes really need? By involving them of course! That’s exactly why we have established the DCB Lived Experience Panel. By actively listening to the voices of the diabetes community, we want to ensure that the ideas we help develop are truly person-centric.

Meet the DCB Lived Experience Panel!

Switzerland

Vivien Glocker

Vivien is a physician and doctoral candidate active in pediatric type 1 diabetes research and clinical care. She has international experience in type 1 diabetes research (U.S.A., Germany, Switzerland) and has volunteered in diabetes kids camps and events. Her master thesis about the subject “fear of hypoglycemia and quality of life in young people with type 1 diabetes and their parents in the era of sensor glucose monitoring”was published as a first author in the scientific journal Frontiers in 2022.

She is passionate to contribute to the diabetes community, clinical and research field of type 1 diabetes.

U.K.

Niki Breslin

After an initial misdiagnosis of Type 2 Diabetes, Niki has lived with T1D for 23 years. A mother to 3 under the age of 6, Niki is involved in a variety or peer support groups, research advisories and projects aimed specifically at the preconception, pregnancy, postpartum and parenting stages of life with T1D, as well as a general focus on women’s health. Within her advocacy journey Niki is always keen to ensure balanced conversations free of stigma and misconceptions around living with any type of diabetes, believing this has the ability to empower and embolden other people living with Diabetes to make informed choices about their lives. Niki is currently developing a Language Matters Pregnancy and Diabetes document with support from a team of healthcare professionals and others with lived experience, this is a great opportunity to involve specialties within the healthcare system that don’t have explicit understanding of diabetes. 

India

Deeksha Dev

Deeksha is a Diabetes Psychologist and a Certified Diabetes Educator who has lived experience of 24 years with Type 1 Diabetes. She works with the Diabesties Foundation as their Director of Advocacy and Experiences wherein she gets the chance of giving back to the community by counselling, educating and empowering them. She also represents India under the Young Leaders in Diabetes programme by the International Diabetes Federation and she is also a #dedoc° voice. 

She was invited by IDF to speak about ‘Mental Health and Diabetes’ on the occasion of World Mental Health Day and by #dedoc° to speak about the same on World Diabetes Day. 

Deeksha created a project called ‘Unwind’ which aims to create a safe space for everyone to begin a dialogue about living with diabetes and its impact on one’s mental health. She primarily works to raise the profile of Type 1 Diabetes in the community (with stakeholders), outside the community to create awareness about Type 1 Diabetes and a stigma free environment for us all and to ensure that mental health is included in all the conversations around Diabetes. Her sole aim is to create a space at the table for lived experience when Mental Health and Diabetes is being addressed anywhere in the world.

U.K.

Isabelle Newman

Isabelle has been living with type 1 diabetes since the age of 9. She is currently studying Medicine at the University of Manchester and is passionate about making technology available to all people living with diabetes. She has walked the 12 Bridges Challenge for Diabetes UK and cycled as many kilometres as she had been weeks diagnosed, raising almost £4000 in the process. She wants to empower people living with diabetes at all stages and has currently worked closely with children who have just been diagnosed and their families, answering questions and providing a friendly, knowledgeable face, as a healthcare assistant in hospitals.

U.K.

Emma Doble

Emma was diagnosed with type 1 diabetes at the age of 4 and struggled to manage it growing up. She set up and developed a number of projects to initiate peer support for young people with type 1 including a project using drama to help young people talk about their experience with diabetes.  Emma works at the BMJ leading on their patient and public partnership strategy. Her interest in patient partnership began when she began working with her local diabetes team to review, and redesign, the diabetes service whilst completing her MSc in Health Psychology. She also works with Cochrane UK, JDRF UK, Diabetes Scotland and the Scottish Government guiding them on patient partnership.

India

Jazz Sethi

Jazz Sethi is the founder and director of The Diabesties Foundation – a global movement to make those with Type 1 Diabetes feel heard, understood, supported and celebrated – with a dedicated youtube channel, monthly meet ups, Awareness tours, education programs, access and advocacy drives and several other creative projects. She was diagnosed with Type 1 Diabetes when she was 13 and currently in on Pump, CGM and DIY Loop. She lives in India.

She was the IDF’s Young Leader of Diabetes for South East Asia for 2019-2022 term representing India.  The Diabesties Foundation works closely with Diabetes India, RSSDI, and NHS England for developing projects and publications.  Jazz is also a certified diabetes educator and did her training with the IDF program. 

She is also a professional dancer, choreographer, theatre artist and a published author. She completed her training from Broadway Dance Center in New York and the AEF from Florence.  Her mantra is simple – Live Happily and Bolus Regularly.

India

Mridula Kapil Bhargava

Mridula has been living with type 1 diabetes for over 30 years and is the founder of Diabetes Fighters’ Trust, a not-for-profit focused upon prevention as well as better management of Diabetes in urban and rural India using the concept of community ownership. In 2021, she won the “Diabetes Storytelling Lab in India 2021”, has been selected as a #dedoc° voice 2023 and sits at several National and International Advisory panels including CAP-Medicines Patent Pool, NCD Advisory Board- FINDdx, Member-WHO Global Diabetes Compact, Associate Member-Healthy India Alliance.

Zimbabwe

Tinotenda Dzikiti

Diagnosed with type 1 diabetes in 2010, Tinotenda is an agent of change who’s extremely passionate about the improvement of diabetes care within the international diabetes community. He’s been involved in the advocacy of diabetes since 2019, when he was selected to represent the Zimbabwe Diabetes Association as an Ambassador at a camp hosted in Addis Ababa, Ethiopia.  He was encouraged and inspired and soon realized that he could start engaging the community and raise awareness through different media channels such as radio and television interviews as well has his personal blog. Tinotenda is a Digital Advocate for T1International as well as a part of #dedoc°voices.

U.S.

Crystal Diaz

Crystal has been living with type 1 diabetes since 2019 and is passionate about uplifting patients’ lived experiences, especially those of people of color. She recently graduated from the University of California, Davis with her Bachelor of Science in Global Disease Biology with plans to become a physician assistant. Her diabetes advocacy started in 2021 with the Diabetes Link NextGen Fellowship program where she found inspiration and confidence in living with diabetes. Since then, she has volunteered with Children with Diabetes at their Friends for Life Orlando conference, spoke about mental health and stigma in diabetes for Diversity in Diabetes, and represented patient voices for the DiabetesMine Innovation Days. Crystal hopes her advocacy will encourage others to feel understood and empowered, creating a safe space for them to share their lived experiences.

U.S.

Claudia Lewis

Claudia is an endocrinology physician assistant (PA) who has had type 1 diabetes since the age of 12. She works both in the hospital and clinic taking care of patients with diabetes. Her research experience includes serving as a co-investigator for the development of a simulation platform for diabetes self-management and technology education. She has spoken at the Association of Diabetes Care and Education Specialists conference on empowering young adults with diabetes. She was also identified as a Diabetes Link NextGen Leader and was awarded the 2022 DiabetesMine Patient Voices scholarship. Her passion is connecting with people with diabetes and providing them with education and support to help them live their highest quality life.

Singapore

Candy Gan

Candy has been living with Type 1 Diabetes (T1D) since the age of two, but dived into advocacy work during university. In 2017, she delivered two TEDx talks about her T1D experiences (Accountability is not Responsibility; Towards a Patient-Centered Care System: A View From Chronic Illness) and worked with JDRF UK and Diabetes UK to raise awareness of the importance of patient voice. In 2022, she co-authored Singapore’s first bilingual children’s picture book based on real-life patients’ stories of their diagnoses and learnings. The book, “My Name is Adam. I have Type 1 Diabetes” is available in English and Mandarin, and has been distributed nation-wide to primary schools, kindergartens, child care centres, and public libraries. This book is her endeavour to give those with T1D a resource she wished she had as a child. She volunteers for the local T1D community typeOne.sg – a community of T1D families in Singapore.

Switzerland

Laura Burlando

Laura is a patient advocate living with type 1 diabetes, passionate about improving the lives of people with diabetes and bringing in the patient voice. She’s currently studying a Master’s Degree in Health Sciences to deepen her knowledge of the healthcare system and complement her own experience navigating it as a patient. In the future, she hopes to incorporate the knowledge she gained from my studies as well as her lived experience to better address the unmet needs of people living with diabetes. Laura is part of the Diabetes Online Community as well as #dedoc°, an international network of diabetes patient advocates, and frequently shares her ups and downs with type 1 diabetes online. She also enjoys working with different industry partners on type 1 diabetes.

Germany

Lea Raak

Lea is an activist and patient expert for chronic diseases and disabilities. Diagnosed with type 1 diabetes herself since 2011, she has been involved in a variety of international projects on the topic of type 1 diabetes for many years, focusing on the psychological component of the disease and combating social prejudice. As a speaker, she regularly does educational work, especially in the field of digital health. Her professional background is in international cooperation with a focus on gender and disability studies.

South Africa

Thapi Semenya

Thapi is passionate about advocacy and has been living with diabetes for 16 years. She uses her social media accounts to educate about her multiple chronic conditions namely diabetes, vitiligo and bipolar disorder. Passionate about advocating for access to basic diabetes management needs and affordability to diabetes technologies, Thapi is currently studying Law and is planning to specialise in health law. Thapi started advocating in 2018 when she realised that she wanted to form a community and allow for a space where people living with diabetes can come together and share their hopes and struggles. Her volunteer work includes working with a Glasgow based charity committed to raising awareness of and supporting disabled young people called The Luna Project UK as a Professional Advisor. Thapi is moreover a #dedoc° voice, a trainee in the IDF Young Leaders in Diabetes programme for 2022-2024. and volunteers as part of Media & Communications for Mutual Aid Diabetes

Sweden/Switzerland

Hanna Boëthius

Hanna is originally from Sweden but lives in Switzerland. She has been living with type 1 diabetes as her “constant companion” for 37 years, and says that her diabetes has also become her biggest teacher. Through her own company, Hanna Diabetes Expert, she consults various companies, has public speaking engagements and workshops – all focused on the topic of diabetes and being a patient. Hanna believes there is power in sharing your story and experience living with chronic conditions, like type 1 diabetes, and she aims to do this through her work, as well as social media. She currently writing her dissertation for a MSc Diabetes from the University of Leicester, UK.

Australia

Leon Tribe

Leon is a person with Type 1 Diabetes (LADA) living in Sydney, Australia. As well as a first class honours degree in physics, Leon has an MBA in strategy and leadership. For his day job, Leon works as a presales Solution Advisor for a large software implementation company, frequently presenting technical solutions to non-technical audiences. Leon was a top 20 finalist in the DCB Innovation Challenge 2022 and is an active member of the #dedoc° Voices programme. Having attended conferences such as ATTD and EASD on multiple occasions, Leon communicates the latest research to the wider diabetes community through social media, providing the patient’s perspective and translating complex medical research into accessible information.

Spain/Argentina

Lucía Feito Allonca

Diagnosed with type 1 diabetes more than three decades ago in 1992, Lucía stands as a dynamic force dedicated to catalyzing positive change in the global diabetes landscape.

She is a dedicated advocate, communicator and diabetes educator, proud member of the Blue Circle Voices for the International Diabetes Federation, #dedocº and ISPAD  (International Society for Pediatric and Adolescent Diabetes).
As a dual Spanish and Argentine citizen with a cosmopolitan spirit, her passion for improving diabetes care transcends borders.
Armed with a Bachelor’s degree in Law, specializing in healthcare and patient rights,she commits to upholding human rights, particularly the right to health and life, and firmly believes in the relentless pursuit of the best possible treatment for all affected by NCDs.
Her interests and areas of focus encompass, among others, meaningful engagement of individuals living with NCDs, recognizing their irreplaceable expertise in shaping the processes that impact their lives, and digital health, envisioning how digital innovations can revolutionize patient care and support.

Italy/Switzerland

Laura Magnabosco

Laura is originally from Italy, but currently residing in Switzerland as she pursues her PhD in the field of diabetes research. Laura’s journey with diabetes began at the age of 14 when she was diagnosed with type 1 diabetes. Her diagnosis ignited a spark within her for scientific exploration and a deep fascination with the intricate workings of the human body.

Driven by this passion, she embarked on a path of academic excellence, majoring in Medical Biotechnology at university. Her thirst for knowledge led her to pursue a doctoral degree, specializing in diabetes research. Laura is profoundly committed to her work in the lab, where she engages in cutting-edgepre-clinical research. Her ultimate goal is to make a substantial and positive impact on thelives of those affected by diabetes.

Recently she has recognized the immense value in sharing experiences and insights with others who face the same challenges. This newfound awareness has inspired her to extend her knowledge and experiences beyond the laboratory. She believes in the transformative power of shared experiences and hopes to harness it for the betterment of individuals living with diabetes.

Switzerland

Shanelle Glocker

Shanelle is committed to fostering the promotion and international collaboration of start-ups in the field of health and diabetes technology. She supports internationally active non-profit organisations such as JDRF.

Become part of the DCB Lived Experience Panel!

Contact us if want you to become one of our Lived Experience Experts and therefore a part of our international community of innovators, experts, researchers and people with diabetes from all over the world. We look forward to hearing from you!

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