EPF COVID-19 Survey – Your Input is Needed!

Our friends at EPF (European Patients’ Forum), have released a call on a follow-up survey from one conducted by the organisation between September to October 2020 (the report is available here).
The report at the time aimed to gather more information on the lived experience and impact of the COVID 19 pandemic on patients and patients’ organisations. As the COVID-19 pandemic is not yet over, and it continues to impact the daily life of many patients and patients’ organisations, EPF decided to do a follow-up survey.

This time, the survey is presented as two separate questionnaires. One for patients’ organisations (i.e., for you to fill in) and another for individual patients. This latter survey, we will kindly ask you to disseminate it among your networks. It is available in five different languages.

Ø  The survey for patients’ organisations (in English only) is accessible here. We kindly ask that only one staff member per organisation completes the survey.

Ø  The survey for individual patients (available in English, French, German, Spanish and Italian) is accessible here. To change the language, simply select your preferred one in the top-right corner of the page. In there, the survey can also be switched to “screen reader mode”.

The deadline for this survey is 25 September at 23.59 (CEST).

For questions on the survey feel free to reach out to Juan Jose Fernandez Romero, EPF’s Policy Officer, at juan.fernandez@eu-patient.eu.

Please note that the survey for individual patients is done within the scope of the Periscope project, of which consortium EPF is a member. For questions on the project, you may liaise with Lyudmil Ninov, EPF’s Senior Programme Officer, at lyudmil.ninov@eu-patient.eu.

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HORIZON EUROPE Project – Running in the FAMILY

Horizon Europe recently funded the project named ‘Running in the FAMILY – Understanding and predicting the intergenerational transmission of mental illness’, which will officially start on Oct 1st 2022. The Project will receive nearly 11 Mio Euro funding with a project duration of 5 years (Grant Agreement No 101057529).

Mental illness runs in families. The FAMILY consortium aims to improve the life of mentally-ill persons with novel prediction models that are based on better understanding the mechanisms of intergenerational transmission of mental illness. The objectives are to improve causal understanding and gain prediction power from the family context by the innovative combination of statistical modelling of genetically informed designs, causal inference, multimodal and multilevel normative prediction, and molecular mapping, brought by world-leading neuroscientific expertise of the consortium, and address key bioethical and social issues raised by the concept of intergenerational risk transmission and risk prediction.

FAMILY will bring together the largest existing human (epi)genetic and neuroimaging datasets from both within-family population cohorts and familial high-risk offspring studies, as well as utilise innovative animal models to shed light on pathways underlying intergenerational risk transmission. FAMILY will focus specifically on risk for mood and psychosis symptoms and diagnoses. In-depth causal analyses of how and when risk for mental illness occurs will help identify early risk and resilience factors and predict who is likely to be diagnosed or develop symptoms of mental illness. Advanced insights can uncover new targets for the development of preventive strategies to break the intergenerational cycle of mental illness and to support strengths and resource building. An immediate benefit will be to open direct translational perspectives to mental health care professionals by providing new (family-based) risk prediction tools for the early identification of adults and children at risk and to deliver ethical guidelines to guide its implementation. This will accelerate preventive and treatment intervention in vulnerable families and help target resilience strategies to prevent the transition from health to disease despite high familial risk.

EUFAMI is proud and excited to be part of FAMILY, together with research groups from the Netherlands (Erasmus Medical Centre Rotterdam, Radboud University Medical Centre), UK (University College London), Germany (Leibzig Institute for resilience Research, Concentris), Switzerland (Zurich University,; Vaudois University Medical Center, Lausanne), Letvia (Letvia University, Riga), Italy (University of Perugia, Perugia), Norway (Norwegian Institute of Public Health), Spain (Fundacio privada Clinic per a la Recerca Bomedica Barcelona, Fundación Investigación Biomedica Hospital Gregorio Marañón, Madrid), and Denmark (Region Hovedstaden) and with the European Society of Child and Adolescent Psychiatry (ESCAP).

EUFAMI (and ESCAP) will support FAMILY by seeking active engagement of family members, patients, and mental health care professions in research studies on the social and ethical consequences of risk prediction in clinical practice. Also, EUFAMI will support FAMILY with dissemination through the established communication channels focusing on clinical, scientific and policy making stakeholders. Through the collaboration with EUFAMI, FAMILY will have access to 38 family organisations in 26 countries throughout Europe.

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General Meeting 2022

EUFAMI Annual General Meeting took place virtually on Saturday 11th June 2022.

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EUFAMI Statement – Standing in Support of Ukraine and of peace everywhere

Since the Russian invasion of Ukraine commenced over a month ago, we are still trying to understand the evolving situation in the neighbouring countries. We at EUFAMI are closely monitoring the events with care and concern.

Since its foundation 30 years ago, EUFAMI speaks out on behalf of its members at a European level, promotes human rights of the families of people with mental ill health and facilitates humanitarian collaboration across European borders and beyond.

At its most recent meeting the Board of EUFAMI expressed its solidarity with the people of Ukraine, who are fleeing the country in thousands, and in turn with the people of Russia who have spoken out against the current aggressions.

The Board is also requesting member organisations across Europe to respond, in whatever way possible, to the needs of the Ukrainian people, especially those affected by mental Illness and their families and carers.

Humanitarian assistance can come in all sorts of forms, while it is driven by the principle of humanity. In an ongoing effort to strengthen our bonds and relationships with our member organisations and also our partners, EUFAMI will continue to act as advocates for the human and political rights of people with mental ill health and their families in Europe.

Our hearts and minds are with all who have been affected by the conflict, the people who are currently battling mental illness and their families and those who will find themselves facing further trauma during and after this unsettling period.


Urs Würsch

EUFAMI President

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EUFAMI – Invitation for Project Participation – INVOLVE

Dear Members of EUFAMI,

I am delighted to inform you that EUFAMI will shortly launch a new project aimed at supporting member organisations to advocate nationally with their mental health service to improve the involvement of families in services.

The purpose of this letter is to invite you to participate, in this new project entitled Involve.

Current practice in most mental health care systems means that many relatives, friends, partners, and carers feel excluded from having or giving an informed view of their expectations and experiences in relation to the social needs and treatment of the family member they are supporting. Mental Health Services often, unconsciously and consciously, exclude family members, friends, or other care partners, from the care and treatment process and focus only on the person presenting a mental illness. International research reflects this experience and is supported by EUFAMI’s most recent research on the Value of Caring.

The Involve project has now been approved and funding has been established with our partners Boehringer Ingelheim (International) GmBH.

Please click here to view the official proposal, which provides further details of the project, for your review.

The project is limited to up to ten national organisations. Any interested organisation should send a brief email expressing interest in the project to me, Dimitra at project.admin.office@eufami.org.

The closing date for expressions of interest is 31st March 2022.

Following receipt, a Zoom meeting will be held with interested members to provide more information.

If you would like to discuss further and ask any questions before agreeing to take part, please do not hesitate to contact EUFAMI’s Executive Director, Mr John Saunders at executive.director@eufami.org or call at +353 879271292.

Many thanks for taking the time to read this information.


Dimitra Stefanopoulos

Administration & Communications Officer

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EUFAMI Statement on the situation in Ukraine

It is with sadness and concern in which we at EUFAMI are reaching out to you at this moment of crisis.

The Board of Directors and Secretariat of EUFAMI closely observe the latest events that are evolving and escalating in Ukraine and as an organisation that supports families of people living with mental ill health in Europe, we are conscious of the upset and danger to all those affected during this time of violence and unrest.

We are currently strengthening our relationships with our member associations and also our partners and together we will continue campaigning so that the families’ human and political rights are recognised and protected.

We will remain informed about the conflict, and we hope to have your support and guidance during this time.

Our hearts and minds are with the people of Ukraine, the people who are battling mental illness and their families and those people who will find themselves facing further trauma during and after this unsettling period.

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EUFAMI’S Prospect Family & Friends Training Programme Contents

EUFAMI’S Prospect Family & Friends Training Programme Contents

Module 1: Coming Together  This module is the first coming together for the newly formed Prospect group. It is about getting to know each other, understanding what can be expected from the training programme and what expectations the participants have.
Module 2: What we have learned about mental health problems!  In this module the participants will discuss and examine what they themselves have learned so far about “Mental Health Problems”. The module will show the participants that the first step in problem-solving approach is to define the dilemma. Once you can define it, you can begin to deal with it.
Module 3: Recognising the Pressures  In this module participants will examine the pressures they have been under due to the mental health problems of their family member or friend.
Module 4: Identifying/Acknowledging Stress  This module facilitates participants to recognise what stress is. It is relevant and useful for understanding that there are risks involved with being an informal carer.
Module 5: Loss & Grief Resolution  In this module participants will examine and discuss the particularly painful process which the informal family or friend carer of a person with a mental health problem will have to pass through
Module 6: Active Coping Skills  This module addresses some of the skills that informal carers have found useful when coping with mental health problems. Learning positive coping skills supports the challenges that many informal carers deal with.
Module 7: Advanced Coping skills  In this module, the group will continue and build on from what they have learnt in the last module. They will work on making advance with their coping skills which allows them to gain personal control of their lives.  
Module 8: Support Mapping  In this module the participants will explore their available support networks and identify what and who is in this network. Any person, resource, professional or organisation can be part of this network.  
Module 9: Change and goal setting  This module facilitates group members to explore the concept of personal change and to commit to this through establishing personal goals.  
Module 10: Conclusion, looking forward, new Prospects  In this session it is important to provide opportunities for group members to review the Training Programme and to check that they know where they are going. They should be able to identify the next steps they wish to take, no matter how “big” or “small” they may be.  

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