Category Archives: Featured

EPF Youth Group Meeting: Brainstorming the Future

This year’s EPF Youth Group spring meeting was held in beautiful Vienna and began with a group dinner to catch up and welcome the new members in to the EPF family. Jana Popova from Bulgaria, Patrik Puljic´ from Croatia and Magdalena Döragrip from Sweden were all warmly welcomed by the “old” members of the Youth Group during the dinner, which mainly consisted of the real authentic Wiener schnitzel. A really good start to the weekend, if you ask me!

Introduction of members and brainstorming

Day two started with both old and new members getting the opportunity to introduce themselves to the rest of the group. For a new member like me, this was a very valuable way to get to know each other and what our goals are. It was also very interesting to hear about all the different conditions other members of the youth group have, and all the activities in which they are involved at national and international level.

We spent the rest of the day brainstorming on new projects, ideas and themes for 2018 and 2019. Sara Gayarre, EPF Communications Officer, led the debate on how we can improve our visibility towards the public, from increasing our presence on social media and on the EPF blog, to better cover and report about speaking engagements. We discover new ways to increase our visibility; some of them I never thought about before, but we will definitely put them into practice!

What is next?

On the last day, we got some updates about what is happening in different EPF working groups and projects and we discussed how the youth group can get involved and contribute with its vision to their development.

We also agreed on which topic we will be working on for the rest of the year and it was decided that until the end of 2018 we will focus on employment and access to education, and from 2019 on sexual education and sexual health.

Finally, we were also recording some shoots for the next promotional video of the EPF Youth Group. Stay tuned after the summer for what I believe will be a great video!

EURORDIS Summer School – a week of inspiration

In June I had the great honor to participate in the professional Expert Patients and Researchers Summer School, organised by EURORDIS (Rare Diseases Europe). The event took place in the beautiful city of Barcelona from 11th to 15th of June. This training was an incredible opportunity to gather together researchers and patient advocates, and I was impressed by the strong motivation of all 40 participants and 20 Summer School Trainers.

The main purpose of the Summer School was to sharpen the advocacy skills of patients and researchers and to increase their awareness about regulatory process of therapeutic development. This year the training course was focused on empowering patients and providing them an opportunity to advocate on European level. But what is the background of this event?

Background of EURORDIS Summer School

The Summer School was launched in 2008, aiming to provide specific support to expert patients. The annual training program consists of variety of topics, including better understanding of clinical research and methodology, medicines development, regulatory procedures, ethical principles etc. The Summer School is combined with 7 pre-training online modules, which have to be completed before the start of the course. They are available for free for everybody.

Highlights of the EURORDIS Summer School 2018

The first day of the Summer School kicked off with an inspirational lecture about the academic and patient representatives perspective on drug development for rare diseases, presented by Prof. Dr. Annemieke Aartsma-Rus and Elizabeth Vroom – founder of the Duchene Parent Project Netherlands. Their wonderful presentation was the best start of one amazing week, full of professional lectures, inspirational role-play sessions and interactive discussions between participants and researchers.

In my opinion, another important part of the program was the introduction of the European Medicines Agency (EMA) to patient advocates and the possibilities for their engagement with it. Also essential highlights about recent achievements in pharmacovigilance and how patients can receive better funding for their organisations were presented. In addition to that, there was an introduction about different projects for patient advocacy and involvement of patients on European level.

The end is only the beginning…

For me the end of the EURORDIS Summer School was just the beginning of one inspirational journey. During the course I have met many wonderful people, who were not afraid to defend the rights as patients with rare disorders. At the same time, I realised that only if we stay together as patient community, we can achieve better results and we can justify the fact that we are valuable members of the society.

5 Questions to: SAFE, the Stroke Alliance for Europe

From time to time, we like to put the spotlight on one of our members. Today, we are delighted to catch up with SAFE, the Stroke Alliance for Europe, who recently joined EPF.

What’s on the top of your agenda?

SAFE is a non-profit-making organisation that represents a range of stroke patient groups from across Europe. SAFE wants to drive stroke and the response to it up the European political agenda and see growth in activity and strength of Stroke Support Organisations in each country.

Why does your organisation exist?

The European Parliament in June 2003 addressed the urgency of tackling the prevention of stroke at EU level to avoid unnecessary deaths and disability in an important workshop. The conclusion was that European governments must act to prevent stroke without delay and a 10-point action plan was drafted. In this 10-point action plan a key goal was to set up a European Patient Group for Stroke. This led to 6 patient groups  forming SAFE, the Stroke Alliance For Europe in October 2004, since then we have grown the number of organisations to the current 34 members.

What is your biggest achievement as an organisation?

Since we were formed, 14 years ago. SAFE is now an alliance of stroke support organisations from over 30 European countries. It has taken a lot of time to develop respect from the medics but we are actively cooperating with the largest organisation of stroke professionals, ESO, after signing a Memorandum of Understanding in 2017. SAFE published the Burden of Stroke Report in May 2017 in the European Parliament, providing insights on the stroke care pathway across 35 European countries. This year, we presented the Stroke Action Plan for Europe 2018-2030, in partnership with ESO, first at ESOC 2018 and then in the EU Parliament.  The Plan includes recommendations for all points along the stroke care pathway. Without SAFE the recommendations and discussions on support and care after rehabilitation has finished would not have happened. SAFE pushed for a new domain of consideration Life after Stroke which has been woefully neglected. At the same time, we are tirelessly working on patient empowerment, by developing an eLearning tool on setting up and growing SSO’s and on advocacy training for our growing number of member organisations. The focus is on training future stroke advocates for achieving better prevention strategies, diagnosis and treatment for stroke, as well as aftercare of survivors and their families.

Our plans for 2019 include an ambitious project of assessing the Economic Burden of Stroke. SAFE already signed a contract with Oxford University to deliver a research report on this topic. The report will be presented in October 2019.

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

One of our slogans it ’Together we are stronger’ and we truly believe in those words. SAFE believes that only in cooperation with other organisations we can achieve our goals and get more attention from all stakeholders and decision makers. We were particularly impressed on the EPF document on the value of Patient Support organisations.

What’s the main misconception about your disease area?

I guess the main misconception is that stroke is an old people disease and it won’t happen to you. Few people understand it’s the second biggest cause of death in the world, and is linked to at least 80% of dementia for example. Meanwhile, stroke is responsible for 9% of all deaths each year in the EU and it is also the largest cause of severe adult disability. Total costs for stroke were estimated at €64 billion across Europe in 2010 and yet it is hugely under-funded in comparison to other chronic conditions. Recent modest improvements in acute care mean that more people are surviving stroke, but with impairment, with the consequence being that we have a major health economic and social burden catastrophe waiting to happen. This will severely impact all EU countries, but especially those where inequalities in stroke healthcare are already known.

Making personalisation possible

Personalised care offers countless benefits to people living with multiple long-term conditions. When shaped around the individual, personalised – or person-centred – care empowers people to manage their conditions, prioritising the needs and wants that are most important to them.

Personal health budgets are one way of achieving this personalisation. They give people the choice and control to shape their care and support around their personal goals and desires.

Recently there has been a spike in interest in personal health budgets amongst policy makers in the UK. In March 2018, Secretary of State for Health and Social Care Jeremy Hunt acknowledged they were key to enabling people to have control over their healthcare and live better lives. NHS England is aiming for 50-100,000 people to have a budget by 2021, and a consultation on extending the amount of people who have a right to a budget closed this month (June 2018).

Engaging the voluntary sector

In the latest report from National Voices, NAVCA and Volunteering Matters, we share lessons from two years’ of working with voluntary organisations and Clinical Commissioning Groups across England, looking at the delivery of personal health budgets.

We learnt that engagement with the voluntary sector was essential for enabling people to have better experiences of personal health budgets. Voluntary organisations have the knowledge, expertise and reach into local communities that cannot be duplicated by statutory bodies.

However, for the potential of personalised care to be realised, a cultural shift is required. This is no easy task, and it needs support on all sides: from health commissioners, statutory bodies, voluntary and community organisations and indeed the people who stand to benefit most: people using health services.

Working in collaboration

When health commissioners and the voluntary sector work in collaboration, people’s care improves. For example, in Warrington, the Clinical Commissioning Group and voluntary sector are working together to provide more personalised care and support at the end of life through personal health budgets. These budgets have enabled 83% of people to die in a place of their choosing, against an average of 26%.

Personal health budgets are not for everyone, and it’s important to remember this. Personalising care means doing what is right for the individual, which by definition will vary from person to person.

However, they offer promising outcomes that prioritise the wants and needs of the person, rather than the system. They empower individuals, allow them to take control of their care and enable them to be active citizens in their communities. For these outcomes to be possible, the voluntary sector has a pivotal role to play.

Employment and Tourettes

What is Tourette Syndrome?

Tourette Syndrome (TS) is a neurological condition estimated to effect over 300,000 children and adults in the UK.  The main symptoms are physical and vocal tics, which typically develop in childhood.  Tics can be simple such as eye blinking, sniffing and throat clearing; through to complex movements and vocalisations that can, at the extreme end, be incredibly debilitating.  Symptoms also fluctuate across periods of hours, days, weeks, months, even years; and environmental factors such as stress and excitement can also affect frequency and severity of tics.

Up to 85% of people with TS will also experience co-occurring conditions including ADHD, OCD, anxiety and depression.  Tourette Syndrome is complex, and unique to each individual.  What you see on the outside is usually just the tip of the iceberg, with much more happening beneath the surface.

What barriers do people with TS face?

TS is a spectrum disorder, those with mild symptoms may not experience any barriers in life as a direct result of their condition.  However, towards the severe end of the scale, tics and co-occurring conditions can be incredibly challenging and cause difficulties for people physically, mentally, socially, educationally and economically.

Employment and TS

The most overt symptoms of TS are physical and vocal tics, which in themselves can be problematic in a work environment, i.e. tics may affect someone’s ability to carry out a particular task, tics can be a source of pain and discomfort, and because of their fluctuating nature, people can experience good and bad periods with their symptoms.  These kinds of physical disadvantages can limit someone’s employment opportunities, or make long-term employment problematic.

The hidden aspects of TS, apart from co-occurring conditions, tends to be the internal world in which individuals constantly deal with the anxiety and anticipation of how their tics will be received in any given environment.  Having TS can be very stressful, and unfortunately, stress often exacerbates tics.  TS is hugely stigmatised and frequently perceived as funny.  The media sensationalism of a small and uncommon symptom of TS – coprolalia (the use of obscene language) – has somehow given licence for society to reduce this complex condition into entertainment.  Employers and work colleagues can significantly help in de-stigmatising TS and therefore help reduce an individual’s stress about how others see them by informing themselves about what TS is, and not be afraid to speak with the individual about how they can support their needs – because everyone with TS is unique. Communication is key, and the employee with TS should always be involved in discussing any changes or adjustments at work that will better support them.

Tics can be suppressed for a short period, although the ability to manage this varies between individuals.  Having adjustments in the workplace such as regular breaks can support someone who is self-managing their tics, as it gives opportunities to tic, rest and recalibrate.

 Looking on the flip side – the advantages of being Neurodiverse

Neurodiversity refers to differences in people’s skills and abilities and encompasses a range of conditions including Tourette Syndrome.  For example, it is known that people with TS show an ability to ‘hyper-focus’, but many may find auditory processing difficult.  Whilst we all have our own strengths and weaknesses, for some people the difference between them is significant. As an employer or colleague you can apply relevant psychological theory, evidence and practice to design interventions that work with human behaviour, not against it, and create an inclusive working environment that works for all.


Further information can be found at:—Guidance-on-employment-for-people-with-TS.pdf

We want equal access to health for all!

The European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) has recently published the findings from its project “Mapping of innovative medicines and devices in EFCCA member countries” in which 31 countries participated.

Why a Mapping project?National health systems and access to various treatments tend to be unequal in different European and non-European countries where EFCCA is represented, in particularly with regards to new, innovative treatments and devices for people with Inflammatory Bowel Disease (IBD). In some of these countries, there are no national registries of IBD patients available that would assist in obtaining relevant information. Therefore EFCCA wanted to find out the situation in each of the EFCCA member countries in terms of access to and availability of innovative treatments in order to highlight existing health inequalities in Europe and to develop the grounds for advocacy work aimed at equal access to treatments.

How we did it

Seven national IBD associations participated in a pilot phase to test an online survey which had been developed by an EFCCA working group coordinated by our Research and Project Coordinator Sanna Lönnfors. Once the online survey had been optimized the working group set out to collect data from all EFCCA members. Respondents were encouraged to cross-check the information provided with the national authorities in their country.

Next steps

The findings of the mapping report clearly show discrepancies across Europe in terms of access to and availability of innovative treatments and devices. EFCCA and its national member associations will use this data to work with national and European policy makers to stress the importance of equal access to treatment as well as the need of accelerated access to new innovative therapies.

Since the issue of innovative medicines is a constantly changing environment EFCCA plans to create an observatory of innovative medicines and devices aimed at keeping information updated and accurate.

Benefits for patients

The findings of the report will add to our exchange of knowledge and give us a better understanding of European healthcare systems. The fact sheets for each country are a handy resource for someone considering working or studying in another country and will improve the mobility of people with IBD in European countries.

Ultimately, we believe that this work will facilitate and accelerate equal access to treatment in all countries and improve not only the quality of care but also the quality of life for people living with IBD.

To read the report go to:

MEN, WORK AND CANCER: a guide for men staying or returning to work after a cancer diagnosis

In November the European Men’s Health Forum launched a unique guide to support men staying or returning to work after a cancer diagnosis.  The first resource of its kind and funded by the Burdett Trust for Nursing in the UK and BMS it answers all the questions that working men whether employed, self-employed or freelance have when cancer strikes.

Why a guide for men?

Although there is a lot of health information about living with cancer out there little of it is targeted at men specifically addressing their particular needs and worries about work issues.

Men are much more likely than women to develop and die from cancer. Survival rates are improving and many more men are living for longer with cancer. This trend coincides with a rising retirement age in the UK and across Europe, meaning that increasing numbers of men with cancer are and will be in work. It is therefore essential to develop interventions that support men living with cancer who are in work with self-care and self-management. These interventions can promote healthy living and enable men to self-manage cancer disease and treatment symptoms and remain within the workforce.

The guide was written by a working man with cancer, developed with a steering group including working men with cancer and read and commented on by working men with cancer. So the content is relevant and written with the patient in mind.  It also addresses the employer’s perspective, the legal position and related matters around money and general health.

Why is this important?

Well when asked, most men with or surviving cancer, still value work and want to return to work.  With longer life expectancy, rising incidence of cancer with an increased survival, more of these men will be seeking a return to the workplace. Tools to support that are essential.

 Spreading the word

The guide and video has been endorsed by a wide range of European health organisations and charities who have helps EMHF get the message out there.

EMHF have also produced a promotional video that supports the messages about going back to work.  It doesn’t use any language so can be used across Europe. Check out the guide and video at:


EUFAMI Celebrates ‘Home’ – Art for Better Mental Health

EUFAMI celebrated its 25th anniversary in November by organising an art exhibition to promote better mental health.  A total of 25 artists from across Europe participated in an exhibition in Brussels framed under the theme of ‘HOME’.

We chose this theme because we believe that ‘Home is where the heart is’, not only a physical place of bricks and mortar, but also an environment where we feel comfortable and accepted, among people who have our best interests at heart.

Over the past 25 years, we have been constantly lobbying at an EU-level for a process of ‘deinstitutionalisation’, which involves getting people out of care facilities and hospices and back within the family and larger community.  We believe that this process should be accompanied by measures to support family and informal carers so they can have access to the kind of services and financial support they need to adequately care for a loved-one.

Recent work, such as our paper on family perspectives on services for persons living with schizophrenia as part of the European Brain Council Value of Treatment project, helped us to collect data and to formulate a socio-economic response to the treatment of serious mental ill health.  We have also provided input into the EU-Compass for Action on Mental Health and Well-being and collaborated in the consultation process for the EU’s landmark European Pillar of Social Rights.

We believe carers are today’s invisible workforce and we will continue to speak up for their rights in policy circles and as part of our larger network on Facebook and Twitter.

In preparation for the 25th anniversary celebration, we contacted artists within our network of members across Europe and we were humbled by their response to share not only their art but their life stories. Orna Levy speaks about her brother Gil Levy, and his dialogue with great artists from the past and his attempt to reconcile himself with the internal voices in his head. British artist and activist Dolly Sen recounts in detail the impact of abuse on her life’s course, and Italian painter Lorenzo Ludi explains how he found his voice through painting. We were also in touch with EUFAMI’s founding mother Gusta Froonickx, who spoke about her life’s ambition to change the way society deals with mental health, who is also channelling her creativity through painting.

More information

You can watch the teaser of the event and visit EUFAMI’s website for more information.

IDF Europe celebrates World Diabetes Day in the EU Institutions!

World Diabetes Day was celebrated on 14 November all around the word, and EPF member IDF Europe organised several activities in the European institutions to bring the topic and their advocacy work to a higher policy level.

At the European Parliament in Strasbourg (13-16 November)

World Diabetes Day is always an important period for our high-level advocacy efforts towards Members of the European Parliaments (MEPs), and this is why this year we decided to organise our annual afternoon debate at the European Parliament in Strasbourg.

Hosted by MEP Roberta Metsola (EPP, Malta) and chaired by MEP Bogdan Brunon Wenta (EPP, Poland) our annual afternoon debate was articulated around the 2017 theme “Women and Diabetes” and was a great success with the participation of six MEPs.

IDF Europe was well represented through the presentations on the role of women in the improvement of health outcomes by Sandra Bršec Rolih (IDF Europe Board Member), on Diabetes in pregnancy by Prof Nebojsa M. Lalic (IDF Europe Board Member), and on our initiative Mobilising Parliamentarians to Act to Prevent, Care and Treat diabetes (IMPACT) by Prof Dr Sehnaz Karadeniz (IDF Europe Regional Chair). During the debate, Rachel Portelli (IDF Europe Youth advocate) and Cristina Petrut (IDF Europe Board Member) also shared their personal story as women living with diabetes.

At the end of the debate, seven MEPs signed our diabetes pledge – a powerful statement on diabetes and available in seven languages – joining that way the 30 members of national and European parliaments who already signed it.

In addition, 270 blood glucose tests were performed by our French member association Fédération Française des Diabétiques from 14 to 16 November at the Parliament.

At the European Commission in Brussels (13-15 November)

For the second consecutive year, IDF Europe was invited to organise a lunch time presentation at the European Commission (EC). The intervention “Prevention of Diabetes in the modern era of affluent society and economic constraints” by IDF Europe Board Member Professor Konstantinos Makrilakis took place on 15 November and attracted more than 30 staff members from the European institutions. It was also live streamed to the offices in Patten.

Thanks to our positive collaboration with the EC, we also organised a blood glucose testing at the Directorate General Environment office, at the Berlaymont (the landmark of the EC in Brussels) and at the Atrium over a period of three days (13-15 November). More than 500 blood glucose tests were performed over that period and this event provided us with an excellent window to educate participants about diabetes, its prevention and complications.

Furthermore, promotional flyers on risk factors of Type 2 Diabetes were given out which allowed us to promote IDF Europe as a frontline organisation representing people living with diabetes as well as healthcare professionals.

We would like to thank Ms Viviane De Laveleye for dedicating her time during the three days of blood glucose testing and acknowledge the support from the EC’s Medical Service department for making this public outreach possible.

More information

If you want to know more information about IDF Europe and its work, visit its website.

Social Media Milestones for the EPF Youth Group

In November, the EPF Youth Group revealed two exciting social media projects that will contribute to further raise the Youth Group’s profile and reach more young patients throughout Europe: a video on non-discrimination, and a redesigned webpage.

The EPF Youth Group recently released its first video, focusing on discrimination and the invisibility of some chronic conditions in young patients. This video, shared with the general public for the first time on 13 November, was developed in close collaboration with our Youth Group members, who offered ideas and examples from their own personal experiences to the video-makers. The Youth Group is proud to have their input and ideas so clearly reflected in the story and hopes that it will challenge people’s perceptions on invisible illness to say no to discrimination!

If you haven’t already watched it, you can find it here and be sure to share it with your colleagues and other patient organisations. In addition to the original English version, the video will soon be available with subtitles in many EU languages.

A window to the public health world!

The second achievement is the launch of a redesigned subpage for the EPF Youth Group. As part of the EPF website, the Youth Group subpage covers the basic information on the group’s members, activities, and purpose.

The EPF Youth Group collaborated with the EPF Communications team to completely overhaul the site design and to develop a more user-friendly and comprehensive presentation of the Youth Group. The new design will better highlight the individual members, provide contact information and bios on the President and Vice-President, and will also follow the activities of Youth Group alumni. Finally, this new page has a more intuitive layout and will also offer clearer information for potential members, including contact details within the Secretariat, clear membership criteria and detailed instructions on the application process.

Contact person: Danielle Flores, Project Officer: