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5 Questions to the European Congenital Heart Diseases Organisation (ECHDO)

Every month we put the spotlight on one of our members. Today, we are delighted to catch up with the European Congenital Heart Disease Organisation (ECHDO), who recently joined EPF.

  1. What’s on the top of your agenda?

Our main objective is to bring congenital heart disease (CHD) associations together. Our members have a wealth of experience in overcoming the challenges faced by new, growing or long-established organisations, including raising funds, registering as a legal body, recruiting volunteers and staff, setting up events, and running campaigns. By connecting our members together, we create a platform for exchange supporting the growth of CHD patient organisations.

Another core objective is to support local CHD associations in setting up national coalitions in countries where such a network does not exist yet. By supporting the development of national CHD organisations, we help raise awareness of the condition and ultimately provide greater support to patients. We also collaborate with scientific associations, such as the Association of European Pediatric Cardiology (AEPC) and help patients and families with information regarding their health care, especially when they have to travel abroad.

  1. Why does your organisation exist?

Our agenda is to share information and experience in order to improve access to the best possible care and treatment for all people affected by congenital heart disease in Europe. Our organisation exists to bring European congenital heart disease organisations together in order to share best practices on the many challenges faced by CHD patients. Our organisation also provides the opportunity to submit joint proposals for European projects.

  1. What is your biggest achievement as an organisation?

We are very proud of having contributed to the setting up of national coalitions of CHD patients, such as “AICCA”, the Italian GUCH (Grown-Ups with CHD) Association and Beating Hearts Malta (BHM).

Sharing expertise and knowledge with many different CHD associations, for instance by organising major European conferences can also be considered a main achievement, as it eventually helped growing the patient organisations and in turn, supported the patients and/or carers in their everyday lives.

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

Being an EPF member brings a lot of benefits:

  • We can connect with other umbrella organisations;
  • We receive information and training about patient empowerment;
  • By getting together under the umbrella of EPF, we are able to influence European policy-makers and make our voice heard at the EU level.
  1. What are your main challenges?

Many people do not even know about the existence of congenital heart disease. One main misconception is that heart disease occurs only at a later stage in life. More education is required when it comes to the general population.

Survey Shows Substantial Impact of Rare Diseases on Daily Life

EURORDIS-Rare Diseases Europe ran the first Europe-wide survey on the social impact of rare diseases. Results demonstrate a serious impact on everyday life for over 80% of patients and families.

Over 3,000 respondents (including patients and carers) across Europe took the survey ‘Juggling care and daily life: The balancing act of the rare disease community’, conducted via the EURORDIS-Rare Diseases Europe survey group Rare Barometer Voices in the framework of the EU-funded INNOVCare project.

The results show that the time burden of daily care management and care coordination for rare disease patients and families is substantial:

  • 42% of total respondents spend more than 2 hours a day on care for their disease.
  • 62% of carers reported they spend more than 2 hours per day on tasks related to the disease while nearly a third spend more than 6 hours a day on care for a patient (in comparison, OECD figures[1] show that 50% of carers (for patients with any type of disease or dependent conditions) provide less than 1.4 hours of care a day).
  • 38% of respondents declare that they were absent from work due to health-related problems for over 30 days in the last 12 months.
  • 41% of patients and carers responded they need special leave at work but could not obtain it.

Dorica Dan, Member of the EURORDIS-Rare Diseases Europe Board, commented,This survey confirms that the time burden of care is enormous, as is the effect of a rare disease on social, work and school life. Rare diseases pose real challenges for the person affected as well as their family or those who assume caregiving responsibilities. Patients and families need person-centred care to connect the dots across the various health and social services.

The survey covered ​issues surrounding the impact of rare diseases on daily life, including ​coordination of care, ​mental health​, employment and economic impact. See the full results or read the press release.

[1] OECD (2011), “The Impact of Caring on Family Carers”, in Help Wanted?: Providing and Paying for Long-Term Care, OECD Publishing, Paris.

World Continence Week – No More Stigma

Every year, the World Continence Week (WCW) raises awareness about incontinence-related issues. Coordinated by EPF member World Federation of Incontinent Patients (WFIP), this year’s initiative offered plenty of activities and workshops to help understand the disease and lift the stigma.

Incontinence is the unwanted and involuntary leakage of urine or stool. It is a sensitive condition that affects an estimated 400 million people across the world. Conditions affecting the bladder and bowel have often been “taboo” subjects with as a consequence an underreporting and under-diagnosis of these conditions. A lot of urinary incontinent persons do not mention their problem to a doctor or nurse and this figure is even higher for those with bowel incontinence. These conditions have been inadequately treated and poorly addressed by medical professionals, despite the substantial impact on individual health, self-esteem and quality of life.

In light of this situation, the WCW seeks to increase public awareness about these conditions and to empower patients with the confidence to seek help and advices.

Other objectives include:

  • Globally facilitate continence promotion to improve health, wellness and quality of life;
  • Provide a reliable forum for those seeking information on continence promotion and therapies;
  • Create a worldwide network of events and organisations that will be recognised as leading authorities of Continence, Bladder and Bowel Health information;
  • Promote a multi-disciplinary approach to treatment.

WCW Events are held around the world, for example:

  • The Canadian Continence Foundation (TCCF) has co-hosted a Public Forum on Pelvic Floor Health in conjunction with the International Urogynaecology Association (IUGA) in Vancouver.
  • In the UK, 343 people broke the world recordof simultaneous bouncing on mini-trampolines, to illustrate the silence and stigma around those embarrassing “little leaks”.

Follow WFIP on Facebook:

EULAR Annual Congress – Perspective of the EPF Youth Group

Representing the EPF Youth Group, Lembe Kullamaa attended the yearly EULAR (European League Against Rheumatism) congress in Madrid on 14-17 June 2017. Speaking on employment issues for young patients, Lembe underlined the many challenges young people with chronic conditions face when entering the job market.

Access to the job market is a core issue for young patients and is high on the agenda of the EPF Youth Group. Its work on unemployment aims to raise awareness of the extra burdens faced by young people with chronic conditions, as well as bringing public attention to the stigma and discrimination that exist at both the recruitment stage and when employees come to disclose their health conditions. The invitation to present on this important topic at this year’s EULAR congress was therefore a great opportunity to give some visibility to the work of the Youth Group on this issue, and to find potential solutions, or at least some new ideas.

Young Patients Want to Be Active!

Young patients and young people in general are the future of the labour market and ultimately of our society. Today, we see youth unemployment rates rising in several EU Member States and many young people struggle to find a decent job[1]. This situation is exacerbated when you have a chronic condition. Given the progress in diagnosis, the number of young people with a chronic condition is likely to increase, which will inevitably turn into an increase of young patients facing barriers at entering the job market.

In 2016, the EPF Youth Group co-organised with the European Multiple Sclerosis Platform (EMSP) a workshop on employment for young patients and published recommendations to alleviate the burden and stigma around young jobseekers with chronic conditions, including:

  • Providing training and resources to managers and employees to raise awareness of the impact that chronic conditions can have on an individual, and how they can be assisted through small adjustments or specific care requirements;
  • Where quota systems apply, they should be re-evaluated and designed so as to recruit young patients on merit, in competition with other workers without a chronic condition and/or disability.

Transition to Adult Care – Need for More Coordination

The EULAR congress tackled another topic in line with the Youth Group’s priorities and field of actions, namely the central period of transition to adult care. Berit Flato from the Oslo University Hospital informed the audience that half of young people with juvenile idiopathic arthritis do not successfully transfer to adult care, despite best practices in place. She called for more practical guidelines and actions to help patients in this crucial phase of their treatment journey.

In their 2016 roundtable on transition to adult care, the EPF Youth Group came up with very concrete recommendations, calling for:

  • A holistic approach from the healthcare staff and training to communicate with young patients facing the transition process;
  • The standardisation of the responsibilities of Transition Coordinators, profiles that are not often in place in national healthcare systems. The role of coordinators would be to centralise information about young patients in transition to adult care and to facilitate the process, for it to be as smooth as possible.

The 2017 EULAR congress was a great opportunity for the EPF Youth Group to exchange on its policy positions, to learn from other stakeholders on important topics, and to share its recommendations.


5 Questions to: BAG SELBSTHILFE, German national coalition of patient organisations and disability groups

Every month we put the spotlight on one of our members. Today, we are delighted to catch up with BAG SELBSTHILFE, the German national coalition of patient organisations and disability groups, who recently joined EPF.

  1. What’s on the top of your agenda?

Our main objective is to improve the healthcare of all chronically-ill and disabled people. A decisive element is the continuing development of patient participation in the decision-making bodies of the healthcare system, in order to contribute to the care structures and the benefits catalogue of health insurances. Politically, it is a question of effective patients’ representation.

  1. Why does your organisation exist?

The self-help movement in Germany is very well organised, with organisations for all major diseases; for a multitude of rare diseases; and for all kinds of disabilities. BAG SELBSTHILFE is the collective exchange platform of all these organisations.

  1. What is your biggest achievement as an organisation?

In the past two years, we have been able to achieve significant legal improvements in the field of care. The specific demands of people suffering from senile dementia are now much better represented and these patients have genuine, equal access to the care system.

Furthermore, we have achieved important improvements in the field of medical aids.  People with substantially impaired vision, for instance, can now benefit from subsidies for spectacles from the statutory health insurances.  Patients are entitled to improved counselling when it comes to the provision of medical aids and have a much wider choice without additional cost. In the Joint Federal Committee (G-BA) we have been organising the patients’ representation for years, which comprises approximately 220 active patients’ representatives.

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

 We would like to improve the exchange of ideas with our partner organisations in other European countries and to share our views with EPF in European discussions.

  1. What are your main challenges?

One of the main problems in the German healthcare system is the fact that people with disabilities do not have equal access to healthcare services. Many medical practices are not accessible, which makes it difficult for people with disabilities to find a physician. BAG SELBSTHILFE has repeatedly addressed this problem to the politicians, resulting in occasional improvements. The main problem, however, remains unsolved.

Another problem is the complexity of the healthcare system in Germany. Many patients are unaware of their rights and do not understand the available information. In this respect BAG SELBSTHILFE contributes to a national alliance for the improvement of health literacy.

Finally, in the past years, there was an attempt to make the German healthcare system more efficient by intensifying the competition between health insurances and physicians. This has led to an economic vision of healthcare, which is frequently to the detriment of patients.

Overcoming a Chronic Disease: The Best is Yet to Come

Hello, my name is Andreas, I am 27 years old and I come from Cyprus, an island in the Mediterranean Sea. I may look like a typical guy living his own life in full but that is far away from reality.

When I was just 17 I was diagnosed with IPT (inflammatory pseudotumor) disease. IPT disease is a rare chronic condition which is mimicking processes from neoplasma of malignant tumors and that is why it is also called “the great mimicker”. As IPT is a rare condition, classified as a rare cancer type, my diagnosis was really difficult to establish.

I was in Israel for medical investigation for four months when my condition was identified, and accepting my diagnosis was anything but easy, especially for my family.

Living with a chronic disease is an everyday struggle especially for the people that cares for you. Family and friends are fully involved and thanks to the strength and support of those wonderful people, I have been able to overcome my fears, learn more about my condition and organise my life to allow for treatment schedules and medical exams.

That said, I strongly believe that my chronic disease changes me not only physically but also mentally. Your whole world around turns in a flash and your inner power fades out. I have experienced discrimination and hardships throughout my life but that made me stronger and willing to help other patients understand and take on any disease that they have to overcome.

The same passion of helping and empowering patients led me to work in one of the biggest cancer awareness and prevention organisation in my country. I have learned to challenge myself by listening to other people’s experience and grow from their knowledge and wisdom.

I am a strong supporter of taking control over your life. This is the reason why I feel really lucky about joining the EPF Youth Group as sharing our knowledge and experiences will help me as an individual in the process of helping others.

I can’t wait to start this new chapter in my life. The best is yet to come.

Sophie, 16, Helps School Staff Dealing with Lupus Young Patients

Sophie is a young patient suffering from Lupus, a severe auto-immune disease that impacts her time at school. She recently started a project raising school staff’s awareness of this invisible disease, to support them in creating a better environment for all young patients at schools. Read her powerful testimonial here.

“As so many of us know, when you are ill, it is vital that you receive support from those who you usually trust. Your doctors, family and friends are all extremely important in helping you to cope with your illness and to help you feel as healthy as you can. Young people spend so much of their time in school or college that it is only natural that the same level of understanding and care is expected to be provided by members of staff. Unfortunately, I did not have this experience.

I first showed symptoms of illness in when I was 14 in Autumn 2013 and in April of the following year, I was diagnosed with Lupus. Lupus is an autoimmune disease in which the body produces too many antibodies, causing damage to any part of the body. Joint pain made it difficult for me to walk or write, chest pain and breathing difficulty made me struggle moving around and lack of sleep as well as fatigue made it difficult to concentrate in lessons. All in all, daily life was difficult but sadly it was made even harder by the lack of support from my school. I got many remarks from several teachers which I found upsetting such as accusations of ‘skiving’ intense Army Training Day in the week of my diagnosis; questioning whether I should be allowed to use the disabled lift; not to mention the frequent letters regarding my attendance.

Looking back on my time in school, I recently decided to do something about it in hopes of reducing the number of people who have to endure similar things. Therefore, I have started a project with the help of Alder Hey Hospital which aims to help raise awareness of illnesses which are ‘invisible’ as I have found there are so many people who, despite looking perfectly healthy, are feeling very unwell. With this project I hope to make school staff aware of these illnesses and give them a few tips on how they can help.

The project will begin with a simple information pack with simple pointers which will show staff good ways of helping young people with invisible illnesses in a way which will be most beneficial for each pupil as everyone’s illnesses, care requirements and coping mechanisms are different. There will also be an accompanying film which will explain similar things to the information pack with stories from young people who have lived with difficult conditions. Finally, I hope to have as many young people as possible visiting schools in their local area and giving short talks or workshops to the staff in which they can personally explain issues they have faced and things we want to change. I feel this will be a lot more personal and convincing and will make the largest amount of difference.

At the end of last year, we had a small meeting with a few volunteers who shared their school experiences and I learnt a lot about what different people had gone through. (read the report here). It was an excellent starting point and taught me that this really is a big issue that needs to be resolved. I hope that as many people as possible will be willing to get involved and help ensure that a person’s school life does not pose more problems than their health already does.


If you wish to get involved, please contact me at”.

Running the Streets for A Good Cause – Mental Health Europe

On May 28th, Mental Health Europe (MHE) will bring together a team for the Brussels 20 KM to raise awareness about mental health issues and support its European anti-stigma campaign Each of Us.

EPF member organisation MHE is currently running a fundraising campaign and is calling for your support and generosity to give a new impetus to their campaign. This year, MHE is teaming up with the Brussels Platform for Mental Health and Partenamut (health insurance company) to build an impressive line-up of more than 1000 runners.

You can be a part of the solution!

With this campaign, Mental Health Europe wants to get the message across that mental health problems are more common than we think, and that each of us can be part of the solution in changing minds and ending stigma and discrimination against people living with mental ill-health. MHE hopes that this race and fundraising campaign will help raise funds to support their advocacy and anti-stigma work.

With the collected funds, they aim at:

  • improving the Each of Us campaign’s website
  • developing more material to support their message
  • creating an awareness raising video about mental health stigma with the help of professionals
  • organising trainings on mental health across Europe.

So, if you care about mental health and wish to support our member in their campaign: just do it!

About Mental Health Europe (MHE)

Mental health is everyone’s concern and Mental Health Europe‘s (MHE) mission is to have the voice of people living with mental ill health heard across Europe.

Read more about MHE’s work and campaign here:

European Solidarity Corps: Getting it Right for Europe’s Patients!

Announced by the President of the European Commission Jean-Claude Juncker in his annual address before the European Parliament in Autumn 2016, the European Solidarity Corps aims to offer volunteering and work placement opportunities to young people around Europe. The European Patients’ Forum is ready to support this flagship initiative, with the provision that it becomes a beacon for inclusion and equity.

On 12 April 2017, the European Solidarity Corps Stakeholder Forum brought together national and European representatives of civil society organisations, authorities and other stakeholders to discuss the key issues related to the future development of the European Solidarity Corps (ESC). Over 27,000 young people have signed up so far.

The European Patients’ Forum (EPF) welcomes the initiative: patient organisations have a long tradition of working with volunteers – in fact most patient organisations including EPF members operate thanks to volunteers. In that sense, we see in the European Solidarity Corps the chance to spotlight the extraordinary contribution of patient organisations’ volunteers, young and old, which is too often overlooked.

If implemented well, we see the European Solidarity Corps as a double opportunity for the patient community: first, young patients will become involved as mainstream actors and potential volunteers, which could support their skills-building, transition and integration into paid work. This could also be transformative in overcoming prejudice and stigma.  The second opportunity is that patient organisations in Member States – national, regional or local ones – will benefit from more volunteers as they are often very short-staffed and poorly resourced. The European Solidarity Corps could thus make patient groups more visible as “primary targets” for volunteering.

However, without due vigilance, there is also a risk that this programme paves the way for exploitative free or cheap labour. This risk is even greater for young patients, as they are considered more vulnerable and face additional discrimination in “real employment”. Therefore, we believe that a clear definition of quality volunteering and of quality work placements, traineeships and apprenticeships should be at the core of the ESC. It should also be clear that this is not about shifting service delivery to the “third sector” and non-governmental organisations, in a way that allows governments to eschew their responsibilities. This would result in a very negative perception of the ESC and potentially undermine civil society’s central advocacy role.

Another crucial point for EPF is the need to ensure access to the European Solidarity Corps to young people from disadvantaged backgrounds or with specific needs. Such an initiative should be a beacon for inclusion. A specific budget should be allocated to cover costs for personal assistance or extra-support that could be needed for the young person.

When it comes to the operationalisation, we believe that there should be clear and sustainable funding mechanisms. The funding of the initiative has to be clarified by the European Commission, and should not be squeezed from existing programmes. Indeed, the implementation of ESC should add to and complement current initiatives, and not in any way endanger or overshadow their success.

Finally, we should not forget the huge issues facing Europe in the healthcare sector, and notably the persistent inequalities in access to health and social care. Although we acknowledge the ESC’s potential added value for patients and citizens across Europe, the European Patients’ Forum would like to see as much willingness to act on highly political and profoundly human issues such as access to health and social care and the implementation of the Sustainable Development Goals, which the European Union should spearhead, together with the Member States.

MOPEAD: Promoting Patient Engagement in Alzheimer’s Disease

Alzheimer’s disease (AD) has been recognised as one of the biggest health and societal challenges of our times.  The number of people directly affected by the disease will continue to rise and put the sustainability of healthcare services to the test.

We now better understand that some modifiable risk factors like diabetes, hypertension, smoking, increase the risk to develop the disease in the future.  Research also shows that the natural history of AD begins several years before the onset of clinical symptoms. In clinical practice, the diagnosis of AD is still occurring late in the disease process.

Objective: earlier diagnosis of Alzheimer’s Disease

It is in this context that MOPEAD – Models Of Patient Engagement for Alzheimer’s Disease – was convened. This 33-month IMI/EFPIA-funded project started in October 2016 with the aim to identify hidden cases of AD and introduce a paradigm shift that will close the gap between late-stage diagnosis to early-stage diagnosis of AD.

MOPEAD will test four models of patient engagement that can support the early identification of mild AD dementia and early AD patients: ‘Open House’ setting (skill tests), on-line Citizen Science (participation of the general public) and two clinical settings (involving diabetologists and General Practitioners). The tests will be performed in five regional project sites (Germany, Slovenia, Spain, Sweden and The Netherlands). The outcomes of these patient engagement models tested will then be compared and contrasted to identify ways to improve early detection and diagnosis of AD. The findings will help create models of patient access to be established and used in the broader AD community.

On the look for new insights on therapeutic interventions

The goal of MOPEAD is also to help raise awareness about AD versus normal ageing, mild cognitive impairment and the benefits of early diagnosis towards the general population and health practitioners.  Awareness about the risk factors associated to AD will empower people to take action on a healthy lifestyle and to seek information in a timely manner.

Interventions that can help identify hidden cases of AD through patient engagement will hopefully provide new insights for therapeutic interventions in clearly identified populations. Ultimately, MOPEAD should lead to a faster recruitment of patients into clinical trials.

MOPEAD is the first IMI/EFPIA project focussing on patients in AD. There are strong expectations that MOPEAD’s learnings will foster experience sharing and eventually encourage policy makers to endorse and promote the project’s recommendations.

MOPEAD is coordinated by Fundació ACE Institut Català de Neurociències Aplicades. The partners  of the project are Eli Lilly and Company Ltd, AstraZeneca AB,  ASDM Consulting,  GMV Soluciones Globales Internet S.A.U., Karolinska Institutet, KITE Innovation (Europe) Ltd, University Hospital of Cologne, University Medical Centre Ljubljana, Fundacio Hospital Universitari Vall D’Hebron—Institut de Recerca, Stichting VUmc, Alzheimer Europe, Spomincica—Alzheimer Slovenia and the European Institute of Women’s Health.