Blog

At Esperity, we believe in the power of shared experiences and community support, especially when navigating a health journey. That’s why we are proud to introduce TEDCOM, a new online community specifically for individuals living with Thyroid Eye Disease (TED).

A Safe Space to Connect and Share

TEDCOM is more than just a platform; it’s a dedicated space designed for people who truly understand what you’re going through. Here, you can connect with others who are facing similar challenges, share your personal journey, and find comfort in knowing you are not alone. It’s a place to exchange advice, ask questions, and celebrate small victories in an empathetic and supportive environment.

To make it even easier to connect, we’ve created a dedicated Facebook group where members can engage in real-time conversations and stay up to date on all the latest community news.

Your Resources, Your Language

We understand the importance of accessible information. That’s why we have developed the TEDCOM website in multiple languages, making our resources and information available to a wider audience. You can explore the community and its offerings in the language you are most comfortable with:

English: https://tedcom.be/

Dutch: https://tedcom.be/nl/home/

French: https://tedcom.be/fr/accueil/

We invite you to visit our pages and discover the wealth of information and support waiting for you. Come join our community and find strength in connection.

In Belgium, one in ten young people aged between 18 and 35 lives with a chronic or serious illness. While they dream of studying, working or enjoying their social lives to the full, these young people regularly encounter various obstacles within society, particularly administrative ones. To draw attention to their needs, Haute Ecole PXL and Esperity conducted a study of 800 young people to better understand this issue, the impact of which on daily life is often underestimated.  

According to Sciensano, chronic diseases are ‘conditions that persist over time, do not heal spontaneously and rarely heal completely’. The public health institute estimates that they account for ‘90% of the social burden of disease in Belgium, particularly due to functional limitations, but they are also responsible for a significant proportion of deaths’.  

These diseases include diabetes, cardiovascular and respiratory diseases, and cancer. Manon suffers from regular severe migraines: ‘This means I can’t stand noise or light. I often feel nauseous,’ she explains. This has an impact on her daily life: ‘If I have a bad attack, I can’t cook or go shopping. I have to ask my partner for a lot more help.’ 

This mental pressure is a reality for many patients, as Dr Jolien Robijns, a researcher at PXL Zorginnovatie, explains: ‘A chronic illness doesn’t just affect physical health. Young people’s mental well-being, social life and future prospects are also deeply affected.’ 

‘A chronic illness doesn’t just affect physical health.’  

Dr Jolien Robijns, researcher at PXL Zorginnovatie 

Working is also complicated: ‘My migraines cause a lot of fatigue and stress, which can lead to time off work, as has already happened,’ she admits. ‘It also requires adjustments to my schedule. I work in a hospital and some shift combinations are simply not compatible with my health.’ 

This impact on professional life is often an additional difficulty for these patients to deal with, as Magali Mertens, Coach and Disability Manager specialising in return to work, explains: ‘Patients with chronic illnesses can sometimes feel ashamed of feeling tired or experiencing a decline in their cognitive abilities. They wonder whether it is their own fault or the impact of the illness.’ This feeling of being a fraud is widely shared by Manon: ‘Psychologically, telling myself that my health insurance was paying half my salary was difficult to accept because I wasn’t brought up that way and I felt I wasn’t entitled to it. Except that it’s not my fault.’ 

Magali Mertens advocates for more communication between employees and employers: ‘The key is to make reasonable adjustments. Health is a private matter, but a boss needs to be able to say, “The door is open, we’re here to support you, what do you need?”’ she explains.  

Administrative simplification  

‘There is real work to be done at the societal level when it comes to administrative procedures,’ says Manon, who is particularly passionate about the subject: “It’s honestly an obstacle course, bordering on Kafkaesque in its difficulty. We are faced with administrative delays, errors… I fought with my health insurance company for months. This causes a lot of frustration, but also anger, annoyance and fatigue.” 

This survey, commissioned by the FPS Social Security, should enable the authorities to see where improvements are needed, as Peter Samyn, President of the FPS Social Security, explains: “Young people living with a serious chronic illness are less able to study and/or work, which severely limits their participation in daily life and has a significant impact on their financial situation. We intend to use the recommendations of this study to improve social protection for these young people.‘  

This lack of recognition is often difficult for patients to deal with, as Magali Mertens explains: ‘Chronically ill people have a disability that is experienced but not recognised,’ she explains. “This is a real societal challenge. We can’t pretend it doesn’t exist. Tomorrow’s generation, and even today’s, still has a lot to offer… Yet today we talk about active and non-active profiles. There’s nothing in between.”  

Opening up the conversation 

‘I would like chronically ill people to dare to talk about it more, because it’s true that many of us hide it or don’t talk about it,’ says Manon. ‘It’s important because we don’t always realise the impact that a chronic illness has on people’s lives. Sometimes you just have to try not to judge.’ 

Magali Mertens shares this view: ‘Opening up is very complicated. We need to allow people to speak freely, so that it’s not taboo or shameful, but just a fact, so that we can support them as best we can. That’s the best way to make their journey easier,’ she concludes. 

In a pivotal advancement for chronic respiratory disease management, the Global Allergy & Asthma Patient Platform (GAAPP) has joined forces with Esperity, a frontrunner in patient-centric healthcare solutions, to introduce a state-of-the-art portal dedicated to chronic cough, with a particular emphasis on refractory chronic cough. This collaboration is set to elevate awareness and enhance outcomes for this underserved patient community by offering comprehensive educational resources and an in-depth Patient Ambassador program.

Chronic cough, characterized as a cough persisting for more than eight weeks, is a widespread issue that affects millions worldwide, severely impacting their quality of life. Refractory chronic cough, which remains unrelieved by medical treatments, poses an even more significant challenge, often leaving patients and healthcare providers in difficult positions.

A central element of the new portal is the opportunity for individuals to become “Patient Ambassadors” through a specialized training program devised in collaboration with GAAPP. This innovative initiative is designed to equip patients to serve as experts and engage in co-creation processes for the development of new medical devices, apps, or medications, providing critical insights into the pressing needs of this patient population.

GAAPP, which represents over 100 patient organizations globally, enhances the patient voice across various type 2 related conditions, including asthma, COPD, and allergies. Esperity’s commitment to enriching patient experiences through educational and technological solutions renders this partnership a formidable force for transformative change.

“By leveraging our collaboration with Esperity, we aim to globally revolutionize chronic cough disease management and foster the development of cutting-edge solutions that effectively support this vulnerable group,” said Ruth Tal-Singer, Chief Scientific Officer at GAAPP.

Mitchell Silva, CEO of Esperity, adds, “This partnership reaffirms our dedication to advancing science-driven tools that not only improve patient journeys but also promote effective shared decision-making between patients, caregivers and physicians.”

This initiative strives not only to bring chronic cough into the spotlight but also to ensure that those living with this challenging condition receive the attention and support they deserve.

In a pivotal advancement for chronic respiratory disease management, the Global Allergy & Asthma Patient Platform (GAAPP) has joined forces with Esperity, a frontrunner in patient-centric healthcare solutions, to introduce a state-of-the-art portal dedicated to chronic cough, with a particular emphasis on refractory chronic cough. This collaboration is set to elevate awareness and enhance outcomes for this underserved patient community by offering comprehensive educational resources and an in-depth Patient Ambassador program.

Chronic cough, characterized as a cough persisting for more than eight weeks, is a widespread issue that affects millions worldwide, severely impacting their quality of life. Refractory chronic cough, which remains unrelieved by medical treatments, poses an even more significant challenge, often leaving patients and healthcare providers in difficult positions.

A central element of the new portal is the opportunity for individuals to become “Patient Ambassadors” through a specialized training program devised in collaboration with GAAPP. This innovative initiative is designed to equip patients to serve as experts and engage in co-creation processes for the development of new medical devices, apps, or medications, providing critical insights into the pressing needs of this patient population.

GAAPP, which represents over 100 patient organizations globally, enhances the patient voice across various type 2 related conditions, including asthma, COPD, and allergies. Esperity’s commitment to enriching patient experiences through educational and technological solutions renders this partnership a formidable force for transformative change.

“By leveraging our collaboration with Esperity, we aim to globally revolutionize chronic cough disease management and foster the development of cutting-edge solutions that effectively support this vulnerable group,” said Ruth Tal-Singer, Chief Scientific Officer at GAAPP.

Mitchell Silva, CEO of Esperity, adds, “This partnership reaffirms our dedication to advancing science-driven tools that not only improve patient journeys but also promote effective shared decision-making between patients, caregivers and physicians.”

This initiative strives not only to bring chronic cough into the spotlight but also to ensure that those living with this challenging condition receive the attention and support they deserve.

Over the past 30 years, colorectal, gastric, pancreatic, and biliary tract cancers have significantly increased in younger populations, signalling the need for greater awareness and proactive health measures.

On November 14–15, we had the honor of participating in the international #ENTERO conference, organized by Digestive Cancers Europe. This impactful event brought together leading professionals, researchers, and patient advocates dedicated to improving the lives of those affected by early-age onset digestive cancers.

Key highlights that inspired us:

• First-hand testimonies from young individuals facing these diagnoses. Their stories of resilience and empowerment remind us of the strength required to navigate such overwhelming journeys.
• Patient-centered discussions emphasizing the importance of truly understanding each person’s unique needs—from fertility and sexual health to the emotional and physiological challenges they face. Every aspect of their experience matters.
• The invaluable role of family, friends, and patient organizations in offering support and hope throughout these journeys.

Emerging challenges and opportunities:

• Early detection and prevention: Shifting focus towards proactive health measures and raising awareness to catch these cancers early.
• Survivorship and long-term care: Tackling the lasting physical, emotional, and socio-economic burdens faced by patients and caregivers.
• Holistic, patient-centered care: Ensuring that patients remain empowered and in control of their decisions throughout their healthcare journey.
• Future implications for research: Driving innovation to better address these growing challenges.

This conference was more than an exchange of knowledge—it was an opportunity to foster collaboration, build connections, and deepen our understanding of the challenges and needs of patients, caregivers, and healthcare professionals.

Congratulations to the incredible team that made this event possible, the dedicated professionals who shared their expertise, and the brave patients and caregivers who entrusted us with their stories.

Over the past 30 years, colorectal, gastric, pancreatic, and biliary tract cancers have significantly increased in younger populations, signalling the need for greater awareness and proactive health measures.

On November 14–15, we had the honor of participating in the international #ENTERO conference, organized by Digestive Cancers Europe. This impactful event brought together leading professionals, researchers, and patient advocates dedicated to improving the lives of those affected by early-age onset digestive cancers.

Key highlights that inspired us:

• First-hand testimonies from young individuals facing these diagnoses. Their stories of resilience and empowerment remind us of the strength required to navigate such overwhelming journeys.
• Patient-centered discussions emphasizing the importance of truly understanding each person’s unique needs—from fertility and sexual health to the emotional and physiological challenges they face. Every aspect of their experience matters.
• The invaluable role of family, friends, and patient organizations in offering support and hope throughout these journeys.

Emerging challenges and opportunities:

• Early detection and prevention: Shifting focus towards proactive health measures and raising awareness to catch these cancers early.
• Survivorship and long-term care: Tackling the lasting physical, emotional, and socio-economic burdens faced by patients and caregivers.
• Holistic, patient-centered care: Ensuring that patients remain empowered and in control of their decisions throughout their healthcare journey.
• Future implications for research: Driving innovation to better address these growing challenges.

This conference was more than an exchange of knowledge—it was an opportunity to foster collaboration, build connections, and deepen our understanding of the challenges and needs of patients, caregivers, and healthcare professionals.

Congratulations to the incredible team that made this event possible, the dedicated professionals who shared their expertise, and the brave patients and caregivers who entrusted us with their stories.