Patients

overview

Our Type 1 diabetes (T1D) is a life-threatening, autoimmune chronic disease present at any age. Typically presents in early life with a peak around puberty. It affects around 17 million people in Europe and there is no way to prevent it, and at present, no cure.  Every hour, 24h a day, 365 days a year we, the members of the Patient Advisory Committee, live with this disease, with hypo and hyperglycemia fear. Just like you.

patient advisory committee

mother and son

The Patient Advisory Committee (PAC) will give voice to the experiences, opinions and desires of the patients and their relatives to help ensure that INNODIA’s goals and strategy are closely aligned with the goals of people living with, and affected by Type 1 Diabetes (T1D). By bringing a powerful patient and family perspective to INNODIA, the PAC will help ensure INNODIA will deliver a patient-centric approach and specific outcomes with the potential to improve the lives of people with T1D.

support

In 2016 the perception of diabetes must move on more rapidly and is still today seen as a daily burden, fear, danger, unertainety and hype versus hope. To date, no prevention-focused clinical trial has demonstrated efficacy and new/recent onset trials have demonstrated only transient effects.
We fully support the 5 goals of the INNODIA project. This project will help us to better understand our disease and is important in getting better treatment and eventually finding the cure for type 1 diabetes.

The goals are:

Patient Advisory Committee

A clear priority of INNODIA is to keep the needs and concerns of patients with Type 1 Diabetes at the center of the project. The involvement of patients is organized by a Patient Advisory Committee.

The Patient Advisory Committee (PAC) will give voice to the experiences, opinions and desires of the patients and their relatives to help ensure that INNODIA’s goals and strategy are closely aligned with the goals of people living with, and affected by Type 1 Diabetes (T1D).  By bringing a powerful patient and family perspective to INNODIA, the PAC will help ensure INNODIA will deliver a patient-centric approach and specific outcomes with the potential to improve the lives of people with T1D.

Specific Activities

We (the PAC) will advise the Management Board of INNODIA, providing input in a number of areas including informed consent, clinical protocols review and relationships with regulatory authorities and patient organisations who are interested in the INNODIA project.

We will also help communicate results to a  wider public throughout the duration of this 7 year project. Above all, the members of this committee will act as T1D ambassadors within INNODIA helping retain focus on what matters most: people living with this disease every day of their lives.. The PAC will work with the T1D community, taking their views into consideration for INNODIA.

Through INNODIA’s scientific network, we have the chance to connect with more than 15 European countries and the possibility to connect with patients from these countries.

The Members of the Patient Advisory Committee

Johan Keurentjes (1967) I was diagnosed with T1D at the age of 11. I live in Bussum, The Netherlands and I am married and the father of two sons and a daughter. I am a director and co-owner of an e-commerce agency and I have completed 9 marathons.

Kyle Jacques Rose I was diagnosed at the age of 16. I live in Aix-les-Bains, France in the foothills of the Alps. An engineer by training, I am now a specialised consultant in healthcare. My work involves the promotion of sport and healthy lifestyles leaning on my prior experience as a pro athlete. I am a big believer in new treatment/technology and was very excited to experience a closed-loop Artificial Pancreas trial in Montpellier France!

Anders Kristensen I was diagnosed with type 1 diabetes at the age of one. I live in Copenhagen, Denmark where I am studying and enjoy doing sports, both of which is often affected by my disease. I believe no one deserves to live with this disease, and find it important actively advocate for research into better treatments and ultimately a cure for type 1 diabetes. I have spoken about this at several occasions, among others at the JDRF Children's Congress in 2013, and finally I was the keynote speaker at the IMI Stakeholder Forum 2015.

Olivier Arnaud (1955) I am not personally diabetic but really concerned by young children and adults in my close family and friend circle having type 1 diabetes. I share with them their stressful life and the hope for having a cure. I am proud to work for JDRF Research that I am representing in Europe and help in their vision of having a “world without T1D”.

Jaivir Pall (1994) I was diagnosed at the age of 4. Since a young age I have had an interest in supporting people living with diabetes like me! I now work in the national health service in Brighton, UK but support services across the UK. I believe strongly in Europeun collaboration and sharing our learning leading me to work on a project called diabetes youth advocates europe and learning from young people with diabetes from across Europe. I have swim, run, dived, flown and driven in support of diabetes research (not all at the same time!!).

Markku Saraheimo I was diagnosed with T1D at the age of 7. I live in Helsinki in Finland. My wife has had her T1DM since the age of 14 and my first daughter got her diabetes at the age of 2.  I´m working as a diabetologist/ researcher in Helsinki City Hospital /Helsinki University  Voluntary work in Finnish Diabetes Association has been part of my life over 30 years

Nathalie Istas (1977) I was diagnosed with T1D at the age of 2. I live in Belgium, near to Brussels. I am married and a proud mother of two children. For several years, I was Benelux trainer in an American corporation, but 8 years ago, I decided to be more present at home and left business to become a teacher. I am a very dynamic, enthusiast and strong person who loves new challenges, like being part of this project. I believe new ideas can emerge out of this European collaboration. The phrase “a world without T1D” sounds like music in my ears, but in the meantime it is my goal to live my life as normal as possible with this desease.

imi eu efpia jdrf helmsley