DCB Newsletter #1/25: INSIDE DCB โ€“ Interview with Lisa Koch

DCB Newsletter #1/25: INSIDE DCB โ€“ Interview with Lisa Koch

Dear Community,

We are thrilled to present you with the next episode of our series โ€œINSIDE DCBโ€ โ€“ this time, with an interview with Lisa Koch. Enjoy the read!

Since April 2024, Lisa Koch has been an assistant professor at the University and University Hospital of Bern as well as the DCB (Diabetes Center Berne). Using artificial intelligence, she and her team are dedicated to developing demonstrably safe, reliable, and effective data-driven tools to shape the future of diabetes care.

Prof Dr Koch, what is your research about?

My research is concerned with the development of artificial intelligence (AI) methods for medicine. I am particularly interested in how artificial intelligence can be used safely and reliably. For example: How can we explain in an understandable way how an AI makes important decisions? How do we ensure that AI performs just as well for real people as it does in studies? And could it be that the AI is penalising certain groups? If so, how can we recognise and improve this?

What motivates you to work in the field of diabetes?

Diabetes research offers enormous potential to improve the lives of millions of people. The use of artificial intelligence in diabetes technology makes it possible to develop personalised therapies that respond to individual needs. The field of diabetes is also of scientific interest to me because there are many different applications for artificial intelligence. These range, for example, from blood glucose management using wearable devices (wearables) to the detection of secondary diseases of diabetes, such as the early detection of diabetic retinopathy based on images of the back of the eye. There are still many unanswered questions in each of these areas.

What is your greatest challenge as a professor?

My daily life as a professor is very diverse. Even the actual research itself involves a variety of different tasks: I continuously develop my short-, medium- and long-term research vision, supervise students, read and write a lot, and exchange ideas in my international environment. This also includes responsibilities in academic self-governance and teaching. In addition, there are countless other exciting tasks that are important to me: I help organise scientific conferences and am regularly invited as an expert to review the work of other professionals (peer review), participate in panel discussions, or give lectures. I would say my biggest challenge is prioritising and managing my limited time. Fortunately, since I have a great deal of independence in organising my time, the responsibility lies entirely with me: I need to learn to occasionally say no to exciting opportunities.

What goals do you aim to achieve with your team and your lab, the MLM-Lab (Machine Learning in Medicine Lab)?

I have several goals that I would like to pursue with my team. On one hand, my core research objectives are close to my heart: I aim to make artificial intelligence effective and safe for use in medicine. Ultimately, I want to contribute to improved patient care, both generally and specifically for people with diabetes. Itโ€™s important to me that, within this domain, my team and I work on projects that we find personally exciting and that we are methodologically passionate about. Apart from the research content itself, I aim to promote skills in my team and thus offer my team members good prospects for a successful career in research or the private sector. For example, we invest a lot of time in scientific communication. It is also very important to me to create a healthy and positive environment in which all team members can also prioritise their private lives.

What projects are you currently researching and how can they make life easier for people with diabetes?

We are working on various methods to automatically analyse medical images and data from wearable devices such as blood glucose meters and fitness trackers. For example, we use machine learning to tailor physiological glucose models to individuals, and investigate how we can recognise and correct inaccuracies in AI models. These technologies are designed to support people with diabetes by enabling safe, personalised treatment.

How do you work with the DCB?ย 

Our offices are located at the DCB, which leads to regular dialogue. In particular, my team benefits from the interdisciplinary research environment that the DCB and the University of Bern have created with their endowed professorships. The DCB also offers us active access to the network in the field of diabetes technology.

Where do you hope your field of research will be in five to ten years’ time? What is your vision?ย 

Artificial intelligence will have a fundamental impact on many areas of our society in the coming years. My vision is that this change in medicine will be positive. With my research, I want to provide trustworthy technologies to facilitate this.

About Lisa Koch

Lisa Koch is an assistant professor and research group leader at the University and Inselspital Bern. Together with her team at the DCB, she researches and develops trustworthy diabetes care supported by artificial intelligence that brings real benefits to patients and the medical profession.

After completing a bachelorโ€™s degree in electrical engineering (BSc) and a masterโ€™s degree in biomedical engineering (MSc) at ETH Zurich, Lisa Koch completed a PhD in machine learning for medical image analysis at Imperial College London. After a postdoctoral position at ETH Zurich, she joined the Swiss wearable medical device start-up Ava, where she eventually became head of the data science team. In this position, she recognised the need for demonstrably secure machine learning in healthcare. In 2021, she returned to academic research to conduct research on this topic as a group leader for machine learning in medical diagnostics in the Berens Lab at the Hertie Institute for AI in Brain Research at the University of Tรผbingen, Germany.

Thanks so much for reading and weโ€™ll provide you with the next episode of this series soon!

This edition was authored by Sunjoy Mathieu , Communication Manager at DCB, and originally published on https://www.d-journal.ch in German and French.

๎‚

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DCB Newsletter #5/24: INSIDE DCB โ€“ Our Milestones in 2024

DCB Newsletter #5/24: INSIDE DCB โ€“ Our Milestones in 2024

Dear DCB community โ€“ as we approach the end of this year, we want to take the opportunity to look back on our teamโ€™s achievements in 2024 – the seventh year of the existence of DCB.

A lot has been going on and the list keeps getting longer! But see for yourself:

Operations

๐Ÿ‘ฅ Inside DCB: We welcomed the fourth professorship, Lisa Koch, to our premises. In two retreats, we refined our vision, defined our goals, and worked on team effectiveness and collaboration.

โœ… Fully certified: We further developed our Management System according to ISO 9001, defined and integrated clinical processes and passed the SQS recertification audit with flying colours.

โ›‘๏ธ Safety first: Several studies were successfully initiated and conducted at the facility. There were no safety-related incidents.

Innovation & Business Development

๐ŸŒ Global Impact: Our team evaluated over 300 ideas, proposals, and applications, propelling the global innovation ecosystem forward. We identified and supported several dozen projects and startups, providing them with unparalleled expertise, access to our extensive network, cutting-edge facilities, and crucial funding.

๐Ÿ† DCB Open Innovation Challenge 2024: The DCB Open Innovation Challenge once again emerged as a beacon of success. We are very proud of the number of start-ups this year and of our collaboration with the Diabetes Technology Society from the U.S. We are particularly pleased to have received a total of 100 new and innovative ideas from 40 different countries. Six exceptional projects from USA, Spain, Switzerland, Sweden, and the UK took center stage, culminating in a thrilling Award Night attended by 240 enthusiasts from around the globe.ย  This yearโ€™s winner, IMS, impressed the jury with a revolutionary, particularly small, and minimally invasive device for continuous glucose monitoring (CGM). The worldโ€™s first fully integrated single-chip device monitors blood glucose using multiple sensors simultaneously and can also record other physiological parameters such as tissue temperature. It is also able to measure various physiological parameters such as glucose and ketones โ€“ all with just one device.

The other amazing finalists were:

Genomelink โ€“ Yuta Matsuda
Beep Insights – Christine Brรคnnvall
Innodose – Sufyan Hussain
Neuria – Frรฉdรฉrik Plourde
Amic Health – Jorge Bondia

๐Ÿš€Tailored Workshops for Start-ups: Multiple workshops were organised for various start-ups, covering different key topics. They ranged from a few hours virtually to multiple days in person. The workshops addressed everything from clinical insights, data management, project management, communication, to branding. A key point noticed was that investor decks were often too detailed and overloaded with content. Top tip: Investors typically spend only 2.5 to 3 minutes reading them!

๐Ÿ“ŠDT-report: Together with diabetesschweiz, the Swiss Society for Endocrinology and Diabetology (SGED | SSED), and partners in Germany and Austria, we are conducting a representative survey on the topic of diabetes technology for the DT-Report. About 200 people with diabetes and 100 healthcare professionals have already filled out the questionnaire.

๐ŸŽ‰ DCB project Beyond Diagnostics receives Innosuisse grant: Dr. Maren Schinz has secured an innovation grant from Innosuisse to advance her research on insulin inactivity with Beyond Diagnostics, a DCB spin-off. Congratulations!

๐Ÿ“šDiabetes Training for Pharmacists: The Amavita pharmacies from Galenicare in Switzerland organized 5 half-day workshops focused on everything related to diabetes. In these sessions, we provided a comprehensive training for pharmacists to enhance their knowledge and skills in managing diabetes care.

๐Ÿ‘ฅConferences: EASD conference, hosted the Innovation Zone in Madrid and brought almost 20 startups who had the chance to present their ideas to the audience. Our booth was well visited, and we were happy with the results.

Communications

๐Ÿ‘‹ Growing our community: We’ve reached 4,800 (almost 5000!) followers on LinkedIn and more than 700 followers on Instagram in 2025. Weโ€™re so excited our community is ever-growing and appreciate every single one of you, joining us on our journey of making life better for people with diabetes!

๐Ÿ” Visibility boost: DCB hosted the speech of Viola Amherd, President of the Swiss Confederation, on occasion of the 85th anniversary of the oldest Swiss disease awareness day, โ€˜Tag der Krankenโ€™, on 3 March 2024, which resulted in strong media coverage for DCB.

๐Ÿ’ป Website updates: Our website is now enriched with additional content in various sections and is running even faster than before. We want to thank HYVE for the valued and long-lasting collaboration!

๐Ÿ—ฃ๏ธ Valuing Lived Experience: People living with diabetes are at the core of all that we do at DCB. We are so grateful for our continually growing community of Lived Experience Experts โ€“ currently 18 people in 14 different countries all over the world!

Clinical & Data

๐Ÿ”ฌ Innosuisse: We are recognised by Innosuisse as a Research Partner and submissions in collaboration with industry partners are on-going.

๐Ÿฉธ Menstrual cycle project: We are about to complete the menstrual cycle project which was conducted in close collaboration with Tidepool. The aim of this research project is to collect data on diabetes management among menstruating people living with type 1 diabetes to evaluate changes in insulin sensitivity across the menstrual cycle. We have received data from 435 cycles of 76 women and look forward to presenting the first results soon.ย 

๐Ÿ”Ž Clinical Study FibreGum on-going: Under the supervision of our assistant professor Maria Luisa Balmer, the FibreGum study is running at the Children Clinic Berne, assessing the effect of an additive in a chewing gum on body weight loss. 64 adolescents and young adults have been included so far. The participation of the Eastern Swiss children’s hospital in St. Gallen is under evaluation at the competent Ethics Committee. The study will be conducted also there starting 1st quarter 2025. An equivalent study in adults -FaibaGo โ€“ is under preparation.

๐Ÿ”Ž Clinical Study GlucoSet: The DCB is contributing to the first-in-human study where a novel intravascular glucose sensor in an intensive care unit setting is tested. Results are intended to supplement data obtained from laboratory studies, animal studies and an earlier first-in-man study.

๐Ÿ”Ž Clinical Study AID-JUNCT will soon recruit participants: the supervision of our assistant professor Josรฉ Garcia Tirado, the AID-JUNCT will be conducted at the Cantonal Hospital in Olten. It will evaluate the efficacy of tirzepatide (Mounjaroยฎ) as adjunctive therapy to automated insulin delivery on percent time in range . 42 T1D adults will be included.

๐Ÿ“ฅ Clinical Study SPN-005 successfully conducted: At the University Clinic for Diabetology, Endocrinology, Nutritional Medicine & Metabolism (UDEM) in Berne, the study aims to assess the feasibility of a noninvasive medical device, developed by the company Liom, to detect, and track glucose changes transcutaneously in defined and dynamic states of glycemia. 20 T1D adults were included over 6 months and the study results will be available at the beginning of 2025.

๐Ÿค First participant recruited for the Evo Study (Study Sponsor: BODYSenseย SAS): The study will examine associations between glycaemic states such as stable (hypoglycaemia, euglycemia, and hyperglycaemia), increasing, and decreasing blood glucose, and the VOC (volatile organic compound) spectra in the breath measured with a Gas Chromatograph-Ion Mobility Spectrometer (GC-IMS) device as a reference and a portable device prototype to measure VOCs. The device prototype has been developed by BODYSense with the purpose to allow blood glucose monitoring through non-invasive breath analyses.

๐Ÿ‘ฅ Study conduct network extension: The Eastern Swiss children’s hospital in St. Gallen, the Cantonal Hospital in Olten and the Division of Endocrinology and Diabetology of the Medical University of Graz (Austria) are now qualified as study sites and are allowed to conduct studies under our support / responsibility.

๐Ÿ“– Contribution to publications: Using data from our previous VAARA study, the publication led by Prof. Lilian Witthauer titled “Detection of Hypoglycaemia in Type 1 Diabetes Through Breath Volatile Organic Compound Profiling Using Gas Chromatography-Ion Mobility Spectrometry” was featured in Diabetes, Obesity and Metabolism.

A preprint authored by Liom titled “A Prospective Pilot Study Demonstrating Non-Invasive Calibration-Free Glucose Measurement” was published on medRxiv.

DCB also featured numerous abstracts presented at major diabetes conferences, including EASD and ATTD.

๐Ÿ“Š Electronic Data Capture System: REDCapยฎ has undergone significant upgrades and enhancements through the integration of external modules and services. These improvements ensure the platform continues to provide a secure environment, uphold strict quality control standards, and offer user-friendly interfaces. Additionally, REDCapยฎ promotes participant engagement and supports efficient operational management.

Thank you, dear readers for your loyalty and interest throughout the year! We will continue to provide you with new series, inside stories and regular updates in 2025. All the best and happy holidays!๐ŸŽ„ ๐ŸŽ†

๎‚

This post was previously published in Linkedin. Click here to see the original publication.

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DCB Newsletter #4/24: IT’S A WRAP! A Recap of the 2024 DCB Open Innovation Challenge

DCB Newsletter #4/24: IT’S A WRAP! A Recap of the 2024 DCB Open Innovation Challenge

Dear community โ€“ long time no see! At the height of Diabetes Awareness Month Novemver, we are happy to now provide you with a new episode of our newsletter series and give you some insights into this yearโ€™s ย DCB Innovation Challenge.

Enjoy the read!

The DCB Open Innovation Challenge

The DCB Open Innovation Challenge is an opportunity for anyone with an innovative solution to change diabetes management. It only takes an idea to participate for anyone โ€“ whether a healthcare professional, a start-up, a person living with diabetes or others. Those who share their ideas receive sparring and feedback from experts. It all culminates in the DCB Start-Up night, where we award the winners for both categories. The DCB Open Innovation Challenge award is one of the world’s most generous and renowned diabetes-related awards.

This year, incredible 100 ideas were submitted to the challenge from all over the world, and we rang in a new collaboration with the Diabetes Technology Society from the US. Because of this, we had 2 finalists from the US and 4 finalists from the rest of the world. They pitched their projects live on stage in Bern in front of 300 guests and an international jury, who then chose the winner of each category.

But how exactly did we get there and what did the DCB Open Innovation Challenge look like?

Read all about the entire journey below!

Our Top 20

Before we were able to select our top six finalists to travel to our bootcamp and the much-anticipated DCB Start-Up Night, we selected our Top 20.

The Top 20 of received mentoring from chosen experts of our network on various topics, ranging from co-creation experts to regulatory specialists. Additionally, we hosted a Pitch Training session before their big Pitch Day, where they could network and learn from our experts as well as their peers about how to improve their pitch and convince our jury.

The Innovation Bootcamp โ€“ 4 intense days of learning and networking in the Swiss Alps

To get ready for the DCB Start-Up Night with pitches and winnersโ€™ celebrations, we took all six finalists to a bootcamp in the Swiss Alps. Over the course of four days, we spent our time with a stunning view and mentoring, pitch training, 1:1 coaching, and of course, with many fruitful discussions and lots of networking.

But see for yourself! Our team on-site documented their journey and experience in a short video.

The Winners of 2024

On October 3, this year’s DCB Start-Up Night and Award Ceremony of the Open Innovation Challenge 2023 took place. After an exciting evening of pitching, an international jury chose the winners of the fourth edition of the Open Innovation Challenge. The first place and with it 100k CHF in funding and in-kind support went to Muhammad Mujeeb-U-Rahman and his company IMS, for their product CGM+!

IMS (Integrated Medical Sensors) impressed the expert jury with a revolutionary, particularly small, and minimally invasive device for continuous glucose monitoring (CGM). The world’s first fully integrated single-chip device monitors blood glucose using multiple sensors simultaneously and can also record other physiological parameters such as tissue temperature. It is also able to measure various physiological parameters such as glucose and ketones โ€“ all with just one device.

โ€œThe DCB team did an outstanding job. This achievement will provide us with the resources and network needed to gain traction towards our goals, making a significant impact on our companyโ€™s journeyโ€,

shares Muhammad Mujeeb-U-Rahman, CEO of Integrated Medical Sensors.

The start-up Beep Insights was honoured with the Public Choice Award by the audience thanks to its Beep app, which estimates insulin resistance using lactate measurement and other data such as activity and nutrition.

 

We thank all finalists for bringing their innovative ideas to our big stage โ€“ AMIC Health, Innodose, Genomelink and Neuria also did an amazing job and we are excitied to continue working with all of them. Diabetes technology thrives on innovation, and we are very grateful to be working alongside brilliant innovators to make life better for people with diabetes.

“We are very proud of the number of start-ups this year and of our collaboration with the Diabetes Technology Society from the US. We are particularly pleased to have received a total of 100 new and innovative ideas from start-ups. Together with the top six start-ups, we look forward to working on our shared mission to improve the lives of people with diabetes,”

says Ema Grabenweger, Innovation Manager DCB and responsible for the Open Innovation Challenge 2024.

 

Sad you missed out and couldn’t be in Bern for the big night? No need to worry! Watch our highlight video now to get a glimpse behind the scenes:

DCB Start-Up Night 2024

“The DCB Open Innovation Challenge is our annual highlight where we promote the best start-ups in diabetes technology. With a wide range of services from DCB and sustainable networks, we look forward to continuing our collaboration with all finalists and achieving great things together.”

concludes Hanne Ballhausen, Project Manager Innovation and organiser of the DCB Bootcamp.

Itโ€™s been a wonderful few months with the cohort of this yearโ€™s DCB Open Innovation Challenge and we are already eagerly awaiting next yearโ€™s!ย 

Now itโ€™s your turn โ€“ it’s never too early to start brainstorming ideas for the next challenge. We’re excited to see what you come up with fort he Innovation Challenge 2025!

Thanks so much for reading and we’ll provide you with the next episode of this series soon!

๎‚

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DCB Newsletter #3/24: The DCB Open Innovation Challenge is back!

DCB Newsletter #3/24: The DCB Open Innovation Challenge is back!

Dear community,

it’s that time of the year again…the DCB Open Innovation Challenge is back โ€“ and this time, it’s stronger than ever! Do you have an innovative idea to improve diabetes management with diabetes technology? Then continue reading and learn more about the challenge, important deadlines and what’s in it for you! ๐Ÿš€

Can your idea change diabetes management forever?

Do you have an innovative idea to facilitate change diabetes management forever? Want to see how your idea becomes reality? Do you have valuable insights to help co-create the diabetes technology of tomorrow? Do you have feedback to share with others in the community?

We are looking for innovators, co-creators, scientists and diabetes supporters from around the world to join our open idea call and be part of an innovative community at the forefront of diabetes technology.

Now you might be thinking, “That’s great, but what does it have to do with diabetes?”. Most people would perhaps consider diabetes as the opposite of a rare disease when about 537 million people worldwide live with the disease, making it a prevalence of 1 in 10 [3].

However, most outlets usually only cover the most common type 1, type 2 and gestational diabetes. In reality, there are many other types which are considered rare types, and some of them are results of rare diseases. In this newsletter, we want to draw your attention to some of them, to honor all people living with diabetes โ€“ no matter how rare the type!

What’s in it for you?

  • the chance to win USD 100,000 in funding and in-kind support
  • a chance to participate in our one-week bootcamp with mentoring & co-learning, and a pitch training worth CHF 5,000
  • access to a network of experts from the Diabetes Center Berne, @Diabetes Technology Society, and others
  • a kick-start to your business with first class coaching and training
  • a safe harbour where your idea remains entirely yours

Everything at a glance โ€“ this is the timeline of our 2024 Innovation Challenge!

Ema Grabenweger, Innovation Manager at DCB and responsible for the challenge, says: “Our challenge is an excellent opportunity for anyone who would like to get expert guidance on their idea in diabetes technology. Through a carefully designed process we provide a compass for innovators on all levels to efficiently & successfully navigate the complex landscape of developing a medical product or solution to improve the lives of PwD. We do that by offering an open innovation platform for exchange with the community, connection to international experts and mentors who can support to shape the ideas, exposure to venture capitalists and experienced start ups, world-class bootcamp training in the beautiful Swiss Alps tailored to innovator needs. Additionally, the top 6 finalists get to present in front of >300 people in Switzerland and have the opportunity to win an award of USD 100,000 in cash and in-kind service. All of that while having fun!ย Join our community and make your idea dreams come true!”

Ready to become part of diabetes innovation?

All you have to do is register on our Innovation Platform at https://innovation.dcberne.com/ and submit your idea! All former participants (excluding the finalists) of the past years can also apply again, given their idea has been developed further since the last participation.

Idea submission is still open until April 30 โ€“ get the word out and apply! You can find more information on https://www.dcberne.com/en/innovation-challenge/

Whether you are a start-up, a healthcare professional, researcher or an individual, if you have an idea or insight on how to improve the lives of people with diabetes, we want to hear from you! Thank you so much for reading and see you soon for the next edition of the DCB Newsletter!

๎‚

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DCB Newsletter #2/24: DID YOU KNOW… you can help crowdfund innovative diabetes education for South Africans?

DCB Newsletter #2/24: DID YOU KNOW… you can help crowdfund innovative diabetes education for South Africans?

Dear Community, we are happy to present you with the next episode of our series โ€œDID YOU KNOWโ€ โ€“ this time, with a specific connection to our crowdfunding initiative. In this edition, we want to tell you about the impactful work of Sweet Life Diabetes Community and how you can help them make an even bigger impact. Enjoy the read!

Back in November, during our long-awaited DCB Start-Up Night, we successfully launched our very first crowdfunding initiative, supporting the People’s Diabetes Foundation Belize.

At the very same time, Bridget McNulty was on that same stage pitching for her initiative Africa Diabetes Chat as a finalist in our DCB Open Innovation Challenge. She scored second place in the category Digital Diabetes and we’ve maintained a valuable exchange ever since. Now, it’s time to combine all of those efforts and reach out to the whole community โ€“ to get the innovative Africa Diabetes Chat WhatsApp chatbot from the big stage into the hands of the people who need it most.

Join us in crowdfunding CHF 5,000 for the project and help us give South Africans with diabetes the tools they need to survive: Donate now!

Meet Bridget from the Sweet Life Diabetes Community in South Africa

Sweet Life is South Africaโ€™s largest online diabetes community. Theyโ€™re a non-profit and a public benefit organisation, and the primary focus is on diabetes education that people can understand, and relate to. Diabetes is the number one killer of women in South Africa, the number two killer of men. There is no national diabetes education programme, which means people donโ€™t understand their condition โ€“ they are dying unnecessarily. Sweet Life is South Africaโ€™s leading voice in diabetes, and they have an innovative solution for the problem: a WhatsApp diabetes education chatbot! Listen to Bridget tell their story and learn how Africa Diabetes Chat will help many people living with diabetes in South Africa:

Empower South Africans with diabetes: the Sweet Life chatbot

How will your donation help?

 

Your donation helps give South Africans with diabetes the tools they need to stay alive. We all know that “knowledge is power”, but that knowledge has to actually be in the right format, and the right language, at the right health literacy level, to the right person โ€“ exactly when they need it. A WhatsApp chatbot has the power to do exactly that and each donation to our crowdfunding campaign empowers more South Africans with diabetes!

 

Where will your donation go?

Sweet Life Diabetes Community has spent the last three years developing foundational diabetes education content that they have been sending to clinics nationwide in leaflet form. The problem with print, however, is that itโ€™s expensive and difficult to distribute. WhatsApp solves this problem by giving them direct access to people on their phones (there is a staggering 96% WhatsApp penetration in South Africa!)

Your donation will fund the full-time project manager, content development (text, images, video), translation and โ€“ critically โ€“ monitoring and evaluation. They have created focus groups across South Africa to test that this chatbot is truly useful, and understandable. The community is at the heart of everything we do โ€“ and that’s one big part of why we at Diabetes Center Berne want to support this impactful initiative.

Donate Now and Help Us Crowdfund Innovative Diabetes Education in South Africa

 

A little donation can make a big impact for people living with diabetes in South Africa โ€“ luckily, Swiss Francs translate to a lot of South African Rands! Any donation you can offer helps more South Africans with diabetes get the tools they need to stay alive. Join our crowdfunding for Africa Diabetes Chat by Sweet Life Diabetes Community and help us make a lasting impact: Donate now on wemakeit!

For any further questions about this crowdfunding initiative, please feel free to contact Svea Krutisch at DCB or Bridget McNulty at Sweet Life Diabetes Community.

Thanks so much for reading and we’ll provide you with the next episode of our newsletter soon!

๎‚

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DCB Newsletter #1/24: DID YOU KNOW… that there are Rare Types of Diabetes?

DCB Newsletter #1/24: DID YOU KNOW… that there are Rare Types of Diabetes?

Dear Community,

we are happy to present you with the next episode of our series โ€œDID YOU KNOWโ€ in which we publish interesting facts about life with diabetes that you might not know yet. In this edition, on the special occasion of Rare Disease Day, we want to focus on the rare and lesser known types of diabetes. Enjoy the read!

Today is 29 February โ€“ the rarest day of the year, only occurring every 4 years during a leap year. As rare as this day โ€“ or most of the times even rarer โ€“ are many diseases which qualify as “rare diseases”. Between 7,000 and 8,000 rare diseases have been identified worldwide and around 300 million people live with at least one [1, 2]. Rare Disease Day was brought to life by advocacy organisations as an opportunity to raise awareness for rare diseases and to call for a human rights priority at local, national and international level.

Now you might be thinking, “That’s great, but what does it have to do with diabetes?”. Most people would perhaps consider diabetes as the opposite of a rare disease when about 537 million people worldwide live with the disease, making it a prevalence of 1 in 10 [3].

However, most outlets usually only cover the most common type 1, type 2 and gestational diabetes. In reality, there are many other types which are considered rare types, and some of them are results of rare diseases. In this newsletter, we want to draw your attention to some of them, to honor all people living with diabetes โ€“ no matter how rare the type!

Secondary Diabetes

Rare forms of diabetes are often classified as “secondary diabetes”, meaning that the manifestation of diabetes is the result of another disease or medication [5]. There are different types, induced by either genetic mutations, different syndromes or medications such as steroids [5].

MODY (Maturity Onset Diabetes of the Young)

MODY is a rare form of monogenic diabetes, caused by a mutation in a single gene. If a parent has it, children have a 50% chance of inheriting it. With only 1-2% of all people with diabetes living with MODY, it is very rare compared to the common types. Because of its rare character, it is estimated that 90% of people are misdiagnosed with either type 1 or type 2 diabetes at first [4]. MODY typically manifests under the age of 25 and treatment does not necessarily require insulin. There are many different subtypes, depending on which gene the mutation occurs in [4].

 

Cystic Fibrosis Diabetes

As the name suggests, this type of diabetes is a result of the genetic condition Cystic Fibrosis. While people living with Cystic Fibrosis can also develop type 1 or type 2 diabetes, Cystic Fibrosis Diabetes is considered a separate type. It is caused by sticky mucus typical in Cystic Fibrosis scarring the pancreas and damaging the parts responsible for insulin production [6].

 

Type 3c Diabetes

Type 3c Diabetes is often also referred to as “pancreatogenic diabetes” โ€“ it is caused by damage to the pancreas, or its removal [7]. Reasons for the development can thus be an acute or chronic inflammation of the pancreas, pancreatic cancer or other conditions. Type 3c Diabetes can be managed with medication or insulin injection, depending on the extent of pancreatic damage [7].

 

Alstrรถm Syndrome

Alstrรถm syndrome is an extremely rare disease, estimated to affect less than 1 in a million [8]. It is a genetically inherited syndrome which affects eyesight, hearing and other parts of the body. As a result of Alstrรถm Syndrome, people often develop an insulin resistance and a type 2 diabetes [9].

 

Wolfram Syndrome

Wolfram Syndrome is a very rare genetic disorder estimated to affect 1 in 160,000โ€“770,000 people [11]. It is often also referred to as “DIDMOAD syndrome” โ€“ an acronym for its four most common features Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness [10]. The Diabetes Mellitus which comes with this syndrome is different to other types of diabetes and usually manifests during childhood [11]. It is commonly treated with insulin, similar to type 1 diabetes [10].

There are many more subcategories and other genetic disorders that can cause the onset of type 2 or type 1 diabetes, or classify as an entirely different type. To mark Rare Disease Day, we want to hold space for all of these types and the medical diversity within Diabetes Mellitus. Whereas at DCB, we commonly interact with the common types of diabetes, diabetes technologies can benefit all people living with diabetes, regardless of type and pathophysiology. Our aim is to make life easier for all people living with diabetes โ€“ including extremely rare forms.

Thanks so much for reading and we’ll provide you with the next episode of this series soon!

[1] Federal Office of Public Health Switzerland: Numerous Rare Diseases and Many People Affected.

[2] Rare Disease Day: What is a Rare Disease?

[3] IDF Diabetes Atlas

[4] Diabetes UK: MODY

[5] Nomiyama T, Yanase T. [Secondary diabetes]. Nihon Rinsho. 2015 Dec;73(12):2008-12. Japanese. PMID: 26666145.

[6] Diabetes UK: Cystic Fibrosis Diabetes

[7] Marshall JD, Maffei P, Collin GB, Naggert JK. Alstrรถm syndrome: genetics and clinical overview. Curr Genomics. 2011 May;12(3): 225-35. doi: 10.2174/138920211795677912. PMID: 22043170; PMCID: PMC3137007.

[8] Diabetes UK: Type 3c Diabetes

[9] Alstrรถm Syndrome UK: Alstrรถm Syndrome

[10] Diabetes UK: Wolfram Syndrome

[11] Urano F. Wolfram Syndrome: Diagnosis, Management, and Treatment. Curr Diab Rep. 2016 Jan;16(1):6. doi: 10.1007/s11892-015-0702-6. PMID: 26742931; PMCID: PMC4705145.

This edition was authored by DCB Digital Communications Specialist Svea Krutisch.

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This post was previously published in Linkedin. Click here to see the original publication.

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