Dignity for Petya: A Bulgarian mental health story

EUFAMI received this story from Bulgarian association BGFAMI about Petya Bakalova who is living with schizophrenia.  It was written by Kalina Bakalova, Petya’s cousin and legal guardian:


Kalina Bakalova

Petya’s story:

The story of my cousin Petya Bakalova shows how much more needs to be done so that the people with mental disability can have a life of dignity in Bulgaria.

The Beginning: In the spring of 2015 I visited my estranged cousin Petya in her apartment in the small Bulgarian town of Kardzali. Her legal guardian let me inside Petya’s apartment. I expected to find her living the way she used to while her parents were alive. What I saw shook me to my very core. I found Petya locked in a filthy apartment. Her fist words were, “I am not well. I do not get enough food.” I immediately took pictures to document her dire living conditions.


The System of Legal Incapacity: Petya is legally incapacitated. For that reason I was helpless to change her plight for many months. I could not simply take her out of her apartment for without her guardian’s consent it would have been illegal. All I could do was petition with the guardianship authority of the mayor of Kardzali. Surprisingly, the mayor’s office refused to acknowledge Petya’s suffering. My petition was met with silence for several months. Since Petya’s was kept locked I could not even see her. She continued to endure inhumane living conditions. She stayed locked, dirty and hungry.

The public outcry: In my desperation, I turned to the general public for support. I created a facebook page named The Voice of Petya. In addition, two lawyers – Dima Georgieva and Aneta Genova – began working on Petya’s case pro bono. The Bulgarian National Radio broadcasted Petya’s story and was able to procure several interviews with the mayor’s administration. Meanwhile, Petya had no voice. The mayor’s administration presented her as violent and dangerous. Her mental disability was used to justify the horrendous living conditions she was enduring.

The climax: About half a year after I first entered Petya’s apartment, her guardian gave in to the public pressure and gave up her guardianship. The mayor appointed me as Petya’s guardian. I had no choice but to become part of the Bulgarian system of legal incapacity. For the one and a half years that we have spent together, Petya has made tremendous progress. At the beginning she had lost track of time. She did not know what year it was and how old she was. She hardly spoke. Currently, she can have a meaningful conversation. She has a personal assistant as part of one of the several social rehabilitation programs she participates in. She likes going to the park and sitting on a bench. She likes corn, but hates tomatoes. She loves old Bulgarian pop songs and dislikes rock. Amazingly, she has no place for hate in her heart. She seeks no revenge for the past.

The aftermath: The system of legal incapacity in Bulgaria needs to change. It is a system that enables gross abuse. Furthermore, social attitudes need to change. Petya was for a long time victim to stigmatic misconceptions. It was so very easy for her to be presented as aggressive and lacking self awareness. Most importantly, society should switch its focus from controlling and isolating to supporting and integrating the people with mental disability.

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EUFAMI welcomes UN Special Rapporteur Report on Mental Health and Human Rights

The recently published UN Report of the Special Rapporteur on Mental Health and Human rights expresses several concerns surrounding the rights of persons with mental ill health, such as the chronic underfunding of mental health services around the world, stigmatisation and discrimination of persons with mental ill health, and the need to shift from institutional care settings to community-based care.

Discrimination negatively affects availability of and access to mental health services. Persons experience multiple and intersectoral forms of discrimination, which may deter them from seeking aid or enjoying high-quality services. Discrimination in everyday life, such as in schools, or the workspace, may harm the formation of healthy relationships, which detrimentally impacts mental health. Also, the Report adds, the role of diagnosis and its impact on the person’s life has to be recognised in the context of stigmatisation and labelling.

The UN Special Rapporteur encourages the use of the psychosocial model by service providers, researchers, and in medical education. The psychosocial model builds from the biomedical model and looks beyond biological determinants to also take social determinants of mental ill health into account.

The report highlights that globally, mental health expenditure is dwarfed by physical health expenditure. The funding gap between higher- and lower- to middle-income countries was also highlighted; mental health expenditure is much higher on per-capita terms in the high-income world.

Additionally, institutionalisation and segregated mental health facilities are reported as concerning because they contribute to stigmatisation, and in certain cases violate the human rights of persons in the facilities. Facilities are understaffed in many countries, facing shortages of specialist and non-specialist staff.

The accessibility of mental health services is another factor; in low- and middle-income countries, services are found around cities and urbanised regions, with low availability in urban regions. Segregation of mental health services perpetuate this gap, as it further geographically concentrates the availability of services.

EUFAMI supports the holistic, multifaceted approach to diagnosis, treatment, and research in mental health, looking beyond a purely biomedical model to take social determinants into account as well. Mental health is in the space between persons, and one of the reasons why we continue advocate for inclusion of users, family members, and other social contacts in the care team as active participants. We strongly support the transitioning to community-based care settings, provided that de-institutionalisation is not used as a pure cost-cutting mechanism and investments are made in community support services, including for family carers.

We therefore welcome the report as an additional tool for advocacy towards a wide range of accessible mental health services for users and families, involving them as active participants.

Read report: Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health

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A family perspective on services for persons living with schizophrenia

At the conclusion of the European Brain Council’s study on the “Value of Treatment for Brain Disorders” (VoT project) EUFAMI is proud to present the report of its contribution to the schizophrenia case study.

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FamiliarMente receives audience with Portuguese President Marcelo Rebelo de Sousa

Portuguese mental health association FamiliarMente was received by President šMarcelo Rebelo de Sousa on 15 May, 2017 to mark International Family Day.  The association’s President and vice-President, Joaquina Castelão and Miguel Durães discussed various issues connected to mental health with specific emphasis on the role of family carers.

FamiliarMente also participated in EUFAMI’s Annual General Meeting between 9-11 June, 2017 and updated members on some of its key developments in the first 6 months of the year, including šthe appointment of FamiliarMente, as an effective member of the National Health Council after being elected by the National Parliament.

On š19 July 2017 FamiliarMente will attend the National Parliament for a public plenary session to assess a petition launched by the association.

For a round-up of all the association’s key events please consult the following Powerpoint below:



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Internship offer: join us and help advocate for better mental health

EUFAMI was founded in 1992 to support families affected by mental ill health. We are committed to promoting the rights of and improving care for people affected by mental health problems. EUFAMI develops programmes and resources supporting families affected by severe mental ill health and the organisations representing them across Europe. We enable our member organisations to act jointly at a European Level, combining their efforts, linking up information and support services and sharing best practices.

Special Events & Fundraising Internship 

Job Description

 As Fundraising and Special Events intern, you will work on a wide variety of tasks leading up to EUFAMI’s 25th anniversary celebrations in November 2017.

You will need to work independently and as part of a small, close-knit team to ensure the smooth running of preparations leading up this key event in EUFAMI’s history.

The role will allow you to gain familiarity of the work of a Europe-wide NGO advocating in the interests of people with mental ill health and their families.  An interest in EU health policy and mental health is an asset though not a pre-requisite.

The Special Events  & Fundraising Internship’s responsibilities will include…

  • Assisting with all aspects in the preparation of EUFAMI’s anniversary celebrations, including scouting venues, compiling guest lists, and overseeing basic budgetary requirements
  • Responding to a host of requests and keeping related internal and external parties up-to-date with proceedings
  • Researching and assisting in reaching out to potential celebrity ambassadors to help promote best practices in mental health care
  • Liaising with local suppliers and contractors in logistical support in the run up to the anniversary and during the celebration itself
  • Working in collaboration with the administrator and communications officer to help in the smooth running of daily tasks as required.

Profile and qualifications 

  • Some experience in event coordination and fundraising activities within community associations
  • A university degree or equivalent
  • An international outlook, and an understanding of the role a small NGO can play within a European context
  • Strong social skills and a positive, can-do attitude
  • An excellent command of spoken and written English. Other European languages are an asset.
  • A basic knowledge of MS Office software to include Outlook, Word, Excel, and PowerPoint


  • Gaining experience in event coordination and fundraising within a European context
  • A chance to meet key stakeholders within the EU institutions in Brussels involved with health and mental health

DURATION: 6 months starting asap (July 1)




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EUFAMI hosts Annual General Meeting and Participation Day

The Board of Directors and delegates from 23 member associations gathered in Leuven between 9-11 June  to attend the Annual General Meeting and the Participation Day.

Over 30 participants in total took part, including new members Familiarmente (PT), EDRA, EPIONI and PEPSAEE (GR) and Adriana Nikolova from prospective member BGFAMI. Charles Harman from US sister organisation NAMI and Yoram Cohen from patient organisation GAMIAN Europe, as well as two of our funders,  joined us for the reception kicking off our #EUFAMI25 celebration year.

It was also an opportunity for members with voting rights to elect the Board of Directors. Vice-President Martine Frager-Berlet of UNAFAM, France was re-elected, as was Spyros Zorbas from Greece, both for their final 3-year term. To complete the number of 9 Board members, Kevin Jones of Shine, Ireland and Eulalia Pereira of ENCONTRAR+SE, Portugal, were newly elected.

Other members reached the end of their mandates.  After 9 years of excellent service on our Board, it was time to say goodbye to former Vice-President Connie Magro (MHA, Malta) and former Treasurer John Saunders (Shine, Ireland).

As part of the Participation Day on 10 June, Elena Balestra at the European Patients’ Forum (EPF) gave a presentation about its #Access2030 campaign on universal health coverage.  This was followed by EUFAMI Secretary General Aagje Ieven, who presented a report on access to services from a mental health perspective.  EUFAMI’s Communications Officer Paul Nolan also gave an overview of the social media landscape connected to mental health and put forward proposals for EUFAMI’s 25th anniversary celebrations later in 2017.

The working weekend ended with a debate on setting the agenda for the months ahead and talking points around mental health, access to services, and the role of family carers.

EUFAMI wishes to thank all members and partners for contributing to the debate and looks forward to continued collaboration in the year ahead.  Pictures of the event can be found in our Flickr photo album.

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Commitments on mental health in the UK must add up to more than words

Public Affairs Officer at Rethink Mental Illness Rory Weal told EUFAMI that it is concerned that pledges on mental health across the political spectrum may amount to little once the dust settles after the UK elections on 8 June.

The Conservatives, Labour and the Liberal Democrats all made mental health a key issue in their recent manifestos.

“Over the last few months and years, mental health has become the ‘issue of the moment’, with many politicians across political parties making commitments to improving attitudes and services.” (Rory Weal)

In total, the manifestos of the three largest parties collectively contain 75 references to mental health — 70 more than the respective manifestos in 2010, excluding the indexes, according to Ed Pinkney writing for the Huff Post.

Campaign promises on mental health

In the UK, it seems that politicians have at least recognised the need to update mental health services, including some concrete pledges.

The Conservatives have announced the provision of 10,000 more NHS mental health staff by 2020 and refer to the “mental health gap”. They promise to introduce the first Mental Health Bill in 35 years and to “put parity of esteem at the heart of treatment”.


Labour, in its manifesto, says it will invest in early intervention, ensure access to services, but also make improvements to those services.


As for the Liberal Democrats, they have looked further afield for fresh ideas, such as the Australian ‘headspace’ model for a dedicated service for children and young people.

Rethink Mental Illness is concerned, however, that the issue, though prominent now, risks falling off the agenda once the new government is installed.

“Commitments on mental health must add up to more than words on a page. After 8 June it will be up to the next government to work on all of these areas and deliver actual change for people living with mental illness” (Rory Weal)

Others are also sceptical. Mark Brown, the former editor of the One in Four mental health magazine suggests that a renewed focus on mental health might not be wholly genuine.

“This gap between public goodwill and detailed knowledge makes mental health the perfect area for a politician who wishes to be seen to be doing unequivocal good. People with mental health difficulties are the new innocent and untainted victims.” (Mark Brown)

Despite commending the renewed interest on the issue, Rethink Mental Illness also says it is eagerly waiting for the pledges to become a reality. Rory Weal says he hopes the next government will commit to “fair access to mental health services and support, a Mental Health Act fit for tomorrow, closing the mental health employment gap, and ensuring a place to call home for everyone with severe mental illness.”

Actions not words

At EUFAMI, we are also pleased that the UK is putting mental health firmly on the agenda and look forward to seeing concrete action in place that will benefit the person with mental ill health as well as the families of those affected. We will continue to monitor and collect best practices from the UK and across Europe.

Whoever wins the elections, we hope the promises are more than just words.

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EUFAMI fights to put health at core of the EU

39 organisations have written to President Juncker asking him to reaffirm health as one of the core responsibilities of the EU in the current debate about the future of Europe.  EUFAMI has joined its colleagues in signing the letter calling for an urgent meeting:

6 June 2017


To: Jean-Claude Juncker, President, European Commission

cc: Frans Timmermans, First Vice-President, European Commission

Vytenis Andruikaitis, Commissioner, DG Health & Food Safety

Günther Oettinger, Commissioner, DG Budget & Human Resources

Carlos Moedas, Commissioner, Research, Science & Innovation


EU Health Collaboration is crucial for Europe’s future

Dear President Juncker,

We, the undersigned organisations, representing EU health stakeholders, wish to express our grave concern about the future of health in European policies and programmes, in the light of your White Paper on the Future of Europe, and propose an urgent meeting with you and your services on this topic.

Our determined view, shared by the vast majority of EU citizens, is that health is absolutely and unequivocally a core business of the EU. Protection of a high level of human health and wellbeing is entrenched in the Treaties of the European Union.[1] EU collaboration in the field of health is indispensable for the future of Europe and rebuilding the trust of citizens in the European Union. We need more health to unlock the full potential of economic and social policies.

70% of Europeans want the EU to do more for health, according to the most recent Eurobarometer survey. With such a strong, unequivocal demand from EU citizens for more action in the field of health, it is essential that this is not only maintained, but actually enhanced. The EU needs to continue deliver results that make a tangible difference in the daily lives of its citizens and thus re-establish people’s trust in its institutions.

Health protection and improvement is a great success story of the European Union

Life expectancy is rising across the EU.  Accession to the Union is positively correlated with health gains and longer lives. Without EU level action and support of the Health Programme, EU citizens would be more at risk from health threats. Whilst there is a need for continuous improvement, protection standards for patients, consumers and workers are amongst the highest in the world, thanks to EU legislation. Indeed, European integration and collaboration has brought great benefits for our health and provides vital resources for our health services: free movement of health professionals, health technologies and patients. We are assured of our right to treatment in other member states, under common minimum safety and quality standards. We are also reassured that, thanks to cross-border collaboration, highly specialised expertise will be shared across borders, as the EU has just embarked in one of its most promising transnational initiatives, the European Reference Networks for Highly Complex and Rare Diseases – an area not only where EU-wide strategies are effective, but also where the added value of EU action is striking.


This is thanks to EU legislation, rights and protections which complement national laws.

It is impossible to imagine a functioning internal market which does not consider and protect the health of its citizens, patients and consumers. Economic growth can only be built by healthy and resilient populations.

EU coordinated health action saves lives and reduces the burden of disease

By facilitating closer cooperation, the EU has saved countless citizens’ lives and contributed to their improvement. The Health Programme is a vital enabler for health policy formulation and for effective implementation and it has, over several years, triggered shared good practices on complex health topics for which EU cooperation is essential (such as patient safety and quality of care), encouraging upward convergence.

The conclusions of the previous Health Programme evaluation were extremely positive, with evidence of its impact beyond its relatively modest (financial) size, and exchange of knowledge and experience between member states which would not otherwise have taken place. Moreover, it “made it possible to develop many activities… where the economic situation and budget restrictions would not have allowed them to be made a priority” – now more critical than ever, when national health budgets are under even more pressure. The Programme was seen as providing value for money, and particularly important for ensuring a human rights-based approach to health policy.

We are therefore profoundly concerned that some of the scenarios in your White Paper on the Future of Europe would even consider reducing European action, cooperation and legislation and to step back from the protection and improvement of our health in Europe.

Instead, this role must be enhanced in the future through a new robust and ambitious Health Programme, convening member states to cooperate on health, underpinning vital collaboration with other institutions such as WHO and OECD and supporting health research.

Unprecedented health and social challenges can only be tackled at a European level

There has never been a stronger case, or a more vital moment for Europe to work together to protect our health.

Whilst life-expectancy has improved, the years gained are often lived in relatively poorer health due to the proliferation of preventable chronic diseases, compounded by huge disparities that persist within and between member states. Average life expectancy is 12 years shorter for a man in Lithuania than in Italy. Discrimination and inequality remains widespread when it comes to access to healthy living conditions and healthcare. For example, the lives of Roma people and refugees are expected to be 10 years shorter than national averages and homeless women in Europe die on average at just 43 years of age because of the multiple health disadvantages they face. The Lisbon Strategy included a target of adding two healthy life years across the EU by 2020, a target that still needs to be met.

Europe is facing important health threats which must become a top priority for this Commission. Our precious, life-saving antibiotics are declining in effectiveness. Antimicrobial resistance is taking hold more rapidly around the world than expected. No single country can tackle that challenge alone. Bacteria and drug resistance cannot be stopped by borders. The alternative if we fail to act is unimaginable: 10 million deaths globally every year by 2050.[2] Rich countries will not be immune. Those of us from countries which take high quality healthcare systems for granted arguably have the most to lose.

National governments were expecting, and calling for, European Commission support in the form of a chronic disease strategy. The majority of Member States want more EU action for health, especially disease prevention and support to increase the safety, quality and efficiency of care, to aid their own efforts to make their health systems more sustainable.

Common challenges to Europe’s health systems require common action

National governments remain responsible for their health systems, but European health systems face common challenges – a necessary shift from disease-focused, hospital-centred care to person-centred, long-term chronic disease management where patients, families and communities play a key role.

Member States thus need cross-border support, in the form of expertise, coordination, exchange of data, evidence and best practices, and programme financing.

National governments cannot address the threats to health and health services alone. We face common challenges from drug-resistant infections, spikes in chronic diseases, obesity, alcohol-related harm, infectious diseases, emerging technologies, rising prices of medicines, and inequities in access to healthcare, that can be tackled together far more effectively.

Looking ahead: Commit to Health and Sustainable Development

Looking ahead, the EU must not shy away from stronger engagement in the field of health. On the contrary, the challenges we are facing and the opportunity to continue demonstrating to European citizens the added value of the EU action on health, compels health to become a EU flagship policy that promotes stronger protection for patients and consumers and ultimately improves people’s lives.

If the EU steps back from protecting patients and consumers and improving our health it would irreparably damage the institutions’ credibility and trustworthiness.

Therefore, a strong future Health Programme is crucial, not least to ensure that voices from civil society – patients, consumers, health professionals, epidemiologists and technical experts – are represented in policy dialogues which build on all available evidence and expertise.

For this we need strong high-level leadership inside the Commission, with specific responsibility for health. Mainstreaming health in other Commission Directorates will not work without stimulus, guidance, knowledge, expertise, and leadership from a strong Directorate for Health.

This is evidenced by recent developments on the Digital Health Agenda, and the symbiotic relationship between DG SANTÉ and DG CONNECT. Other EU policies will be jeopardised without an appropriate health policy lens. Efforts around the Social Pillar and the European Solidarity Corps are not replacements for health leadership within the Commission but rather, should be highly complementary measures to ensure maximum impact on the ground.

The EU has committed to deliver the UN Sustainable Development Goals both within the EU and globally, with a key goal on health.

Health is also high on the international policy agenda – the G20 under Germany’s leadership is discussing antibiotic resistance.  This is because health and access to good quality healthcare and social care are primary concerns for everyone.  Yet international institutions lack the mechanisms for real implementation that make a difference to people’s daily lives.


This makes the EU’s role – and the necessity to do more, not less – absolutely key.  This also requires health leadership and expertise within the Commission working in concert with the health community.

In conclusion:

We call for an enhanced EU action in the field of health that brings the EU closer to its citizens, by protecting patients and consumers and improving people’s health. We call for a EU action on health that fosters cross-country collaboration, integrates the action of Member States and helps them to address the unprecedented challenges we are facing. We call for EU action on health supported by a robust EU Health Programme and the leadership of a dedicated Directorate in the European Commission.

We request a meeting with you at your earliest convenience to explore these issues in more detail and agree a viable way forward.

Yours sincerely,


Archie Turnbull                                                                        Marco Greco

President                                                                                 President

European Public Health Alliance                                             European Patients Forum


SIGNING ORGANISATIONS (in alphabetical order)

Alzheimer Europe ⧫ Association Internationale de la Mutualité ⧫ European Alcohol Policy Alliance (Eurocare) ⧫ European Alliance of Neuromuscular Disorders Associations (EAMDA) ⧫ European Association of Hospital Pharmacists (EAHP) ⧫ European Association for the Study of the Liver (EASL) ⧫ European Cancer Leagues (ECL) ⧫ European CanCer Organisation (ECCO) ⧫ European Cancer Patient Coalition (ECPC) ⧫  European COPD Coalition (ECC)  ⧫ European Disability Forum (EDF) ⧫  European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) ⧫  European Federation of Families of People with Mental Illness (EUFAMI) ⧫  European Federation of National Organisations Working with the Homeless (FEANTSA) ⧫ European Federation of Salaried Doctors (FEMS) ⧫ European Health Management Association (EHMA) ⧫ European Haemophilia Consortium (EHC) ⧫ European Institute for Women’s Health (EIWH)  ⧫ European Liver Patients’ Association (ELPA) ⧫ European Multiple Sclerosis Platform (EMSP) ⧫ European Network of Fibromyalgia Associations (ENFA) ⧫ European Network for Smoking and Tobacco Prevention (ENSP) ⧫ European Parkinson’s Disease Association (EPDA) ⧫ European Partnership for Improving Health, Equity & Wellbeing (Eurohealthnet) ⧫ European Patients Forum (EPF) ⧫  European Public Health Alliance (EPHA) ⧫  European Umbrella Organisation for Psoriasis Movements (EUROPSO) ⧫ Fertility Europe ⧫ France Assos Santé ⧫ Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN Europe) ⧫ Health Action International (HAI) ⧫ International Federation for Spina Bifida and Hydrocephalus (IF) ⧫ Lung Cancer Europe ⧫ (LuCE) ⧫ Mental Health Europe (MHE) ⧫ Platform for International Cooperation on Undocumented Migrants (PICUM) ⧫ Rare Diseases Europe (Eurordis) ⧫ Retina International ⧫ Royal College of Physicians (RCP London) ⧫ Smoke Free Partnership (SFP)




[1] Article 168(1) TFEU requires that ‘A high level of human health protection shall be ensured in the definition and implementation of all Union policies and activities.’ This ‘mainstreaming’ obligation can also be found in Article 114(3) TFEU, and has been further reinforced following the entry into force of the Lisbon Treaty, by Article 9 TFEU and Article 35 of the EU Charter.

[2] Review on Antimicrobial Resistance: https://amr-review.org/home

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Informal carers ‘Track’ conference to be held on 21 June

Informal carers are the focus of a TRACK (for TRAining and recognition of informal Carers’ sKills) conference to be held on 21 June. The event brings together over 100 participants from multiple field of expertise, including ​informal carers, EU Institutions, ​European organisations, Vocational Education and Training providers, ​​regional and local authorities​,​ social partners, ​services providers, associations​, NGOs, ​researchers ​​and the partners of the project. It aims to provide assistance and support for carers by helping them return to the labour market.


Informal carers are people who provide care (usually unpaid) to someone with a chronic illness, a disability or any other long-lasting health or care needs, outside of a professional or formal framework. Informal carers across the EU provide over 80% of all care, with women providing approximately two thirds of care mainly as daughters (in law) and wives/partners. While caring for a relative can be source of personal satisfaction, it brings also its own set of challenges and difficulties. Indeed, the quality of life of carers is generally poorer than for society as a whole. Being a carer is often associated with poverty, isolation, frustration, ill health and depression. Informal carers often face the specific difficulties attached to dementia without benefiting from adequate support. Informal carers of working age face significant difficulties to remain active on the labour market. Learning opportunities, in particular when embedded in a range of support services, are highly valued by informal carers, and recommended by health professionals, vocational training professionals as well as academic research. However, evidence shows that informal carers face a multiplicity of obstacles preventing them from accessing training, including a lack of information, self-awareness, opportunities at disposal and limited availability due to their caring responsibilities. The development of online support and training offers new ways to reach out to informal carers and provide them with new opportunities.

For more information on the event that will include speakers from Eurocarers, Iperia and EFFE, please view the programme

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