This is my first blog post for EPF, and I am thrilled to be able to share my views with so many dedicated readers.  As a physician, a scientist and a breast cancer patient myself, I hope to provide an unusual perspective, in that I can speak from all three points of view.

I believe in being straightforward with my patients because I know they can handle that. I understand the impact cancer diagnosis can have to people, their families and friends, but I remain convinced that patients are always better off well informed. Informed patients are more likely to have trust in the medical profession which leads to a more honest and solid relationship with their health professionals and are able to better handle the side-effects caused by the cancer treatment. In addition, it increases the quality of life during treatment and reduces the costs as unnecessary visits to the doctor. Well informed people are also more likely to take more responsibility in staying healthy and prevent diseases, which is increasingly important in an ageing population.

Patient involvement and empowerment means moving from being just part of a problem, to becoming part of a solution. This is highly connected to the new General Data Protection Regulation that will be adopted in the next days by and will affect how researchers may use patient’s data for large register-based research. A common reaction from my patients after they received their cancer diagnosis – and that I felt myself – is the strong will to contribute to help others. “Can the findings from my case, and the cases of millions of others, be of use to future patients? Can new treatments and better care be developed from what researchers can learn from my illness? Then do what you can, use my data to help others” – that is the sentiment.

Patients want to share data, we want to be a part of research and medical improvement, and we want to minimize the risk of our children having to go through the same diagnosis. And if they do – we want them to have improved treatment and improved chances to survive!  We want to be part of the solution. If you share this belief and want to support it, I recommend that you have a look at the data saves lives website and get involved!

My name is Anna, I am 26 years old and I come from Italy. I also have Multiple Sclerosis (MS).

MS is a neurodegenerative disease affecting the central nervous system causing physical disabilities as well as cognitive impairments. I was diagnosed with MS about four years ago, just after I came back from my Erasmus year in Germany. At the time in my life, I could not have been happier about my future.

Like many others, my diagnosis arrived out of the blue and acceptance has been anything but easy. When you live with a chronic condition you have to deal with many difficulties; the disease does not only affect the people who live with it but everyone around them. Family and friends are 100% involved. Thanks to these amazing people who give me strength, support me in the darkest moments, and push me to pursue my dreams and goals, I have been able to live life as normally as possible.

However, it is still challenging to include MS in my life and it’s very hard for me to accept some limits imposed by the disease. Sometimes I do think that MS is a part-time job! In the last few years, I strove to include the disease in my everyday life, planning every single day and activity according to treatment schedule and medical examinations.

Despite that, I can say that MS is an ‘all-inclusive’ package: on the one hand, the burdens that come with this condition are heavy to digest, but on the other hand opportunities are always around the corner. MS taught me to take life as it comes and be grateful for the little things that it offers. Without MS, I would have never met so many inspiring people who live the disease with a smile, clear determination, and composure. Currently, I am involved in the activities of the national patient organisation and I have also joined the Believe and Achieve programme implemented by EPF member, the European Multiple Sclerosis Platform (EMSP). The programme aims to provide young people with MS with the opportunity to work in supportive environments. Personally, this internship has been the most important professional experience so far and it has been a unique opportunity for me to engage in a dynamic working context.

I believe this is a great example of what is defined as patients’ empowerment: it allows me to take control over what I deem essential in my life: work. I am a strong supporter of the right to employment among young patients, as it gives a sense of social purpose and self-esteem. Unfortunately, this exciting experience is coming to an end but I’m ready for new ventures – and being a member of the EPF Youth Group is certainly one of them.

1. What’s on the top of your agenda?

Political advocacy remains a priority, both nationally and at a European level, on policy development and implementation. But this does not diminish any focus on our other activities, such as our youth engagement through our annual youth leadership camp and involvement in diabetes research, both on a clinical and population level. We also want to reinforce and further cement ties with our members, through regional meetings and the member staff change programme.

2. Why does your organisation exist?

The International Diabetes Federation (IDF) Europe and IDF as a whole exist to be the voice for diabetes. At IDF Europe, we represent 70 national associations in 47 countries across Europe, representing a mixture of patient and healthcare professional organisations. Our strength comes from our members, and it is they who continually provide our motivation to push for change, at all levels. We exist because of them.

3. What is your biggest achievement as an organisation?

Several come to mind. The 1989 St Vincent Declaration, the follow-up Istanbul Declaration of 1999, the establishment of the EU Diabetes Working Group in 2002 (EUDWG), and Policy Puzzle publications (four editions to date), the 2012 EU Resolution, and the continued success of the Youth Leadership Camp.

4. What is for you the key benefit of your organisation’s involvement in EPF?

Being part of the wider patient community is as important for us as just focusing on diabetes. Patients’ perceptions from all other conditions are vital if we are to understand their needs, and then go on to advocate for them. EPF therefore provides a higher platform with a greater voice, bringing together all and every disease area.

5. What’s the main misconception about your disease area?

‘Diabetes only affects the old’, ‘It’s because you eat too much (sugar)’, and ‘It’s your /my fault’. Unless people know someone with diabetes, these are the type of comments that arise. People cannot always differentiate between type 1 and type 2 diabetes, which manifest quite differently.  We believe, however, that together with the efforts of our members we’re gradually overcoming the misconceptions by increasing diabetes awareness and knowledge about the condition.

On the first day, the Chair of ENUSP, Olga Kalina, presented an overview of the activities that took place during the past year. Among them were the submission of our Shadow Report for the EU review on the implementation of the UN Convention on the Rights of Persons with Disabilities, and our submission against the Draft Additional Protocol to the Oviedo Convention concerning involuntary treatment and involuntary placement. More information about these activities can be found in the ENUSP Bulletin.

The second day of the seminar was focused on cooperation with other European organisations. We had the opportunity to listen to speakers from Mental Health Europe, the European Patients’ Forum, the European Disability Forum and the European Union Agency for Fundamental Rights. The overview of these organizations’ objectives helped us to better understand where we stand now and set goals for future cooperation and joint action.

The third day was devoted to planning with four different working groups dedicated to ENUSP Strategy, Fundraising, Communication and ENUSP Positions & Representation. Each group had a moderator to lead the discussion, two of whom had previously completed training courses in the areas of Fundraising and Communication) thanks to the kind support of EPF.

We are doing our best to ensure that the enthusiasm of participants during the Empowerment Seminar continues to serve our common goals in the future. People now have a better understanding of the role and objectives of ENUSP, and came up with ideas of how they can better contribute in the future.

Above all, it was a fantastic opportunity to be among peer activists, who share common ground, interests and understand your concerns like no one else.