Major surgery carries some risk of heart-related (cardiac) complications, such as post-surgery heart attack or heart failure. New technologies are being developed to better detect and monitor these risks and increase patient safety.
In the context of the ongoing trilogue negotiations on the EU4Health programme, and in advance of the first trilogue meeting which took place on Monday 30 November 2020, EPF outlined three key elements of the Commission and Parliament’s positions which the European Patients’ Forum strongly support in a letter addressed to the key negotiators.
The European Patients’ Forum welcomes the Commission’s new Pharmaceutical Strategy for Europe, presented earlier this week. In our view, a main strength of the strategy is that it is centred around patients’ needs, with accessibility and affordability of medicines at the core.
On 27 October 2020, the CHRODIS PLUS project held its closing project conference. Over its 3-years, the aim of the CHRODIS PLUS Joint Action (2017-2020) was to support countries in overcoming the burden of chronic diseases by promoting policies
One important factor in ensuring the high quality of healthcare is that healthcare professionals have the right skills, knowledge and attitudes to practice person-centred care – including shared decision-making,
On behalf of the EPF Board, we are pleased to announce the appointment of Elisabeth Kasilingam as Acting Executive Director on a part-time basis, following the departure of Usman Khan, until the recruitment of a new Executive Director.
The EPF Youth Group is looking for new members!
Are you a young patient advocate?
Are you between the ages of 18 and 30?
Are you passionate about building a better future for young patients?
Then become a member of the EPF Youth Group!
Today, EPF along with 10 associations form the European Alliance for Value in Health. The Alliance represents a broad group of European associations representing patients, scientific and professional societies, healthcare managers, hospitals, regional health authorities and life-science industries.
Today, the European Parliament adopted its position on the Commission proposal to step up the EU’s action in the health sector significantly, through the EU4Health Programme with 615 votes to 34 and 39 abstentions.
Thanks to the already supported work of the several Rapporteurs involved in the agreed and voted Compromise Amendments, EPF believes the current version of the EU4Health Programme Report strongly improves the Commission’s proposal.
Today, across Europe, more than 25 million citizens are affected by infertility. Infertility can be defined as the failure to achieve a pregnancy after 12 months or more of regular unprotected sexual intercourse. Infertility is much more common than most people imagine and can affect both men and women. Large population studies show that as many as one in six couples are affected at some time in their reproductive lives.
On 5 & 6 October 2020, the European Patients’ Forum (EPF) hosted a two-day multi-stakeholder workshop under the framework of the DigitalHealthEurope project. The workshop brought together a breadth of participants including patient advocates, healthcare professionals, policy makers, industry, and other health stakeholders with an interest in digital tools that can empower patients and foster their collaboration with healthcare professionals. It took place over two days of plenary and breakout sessions, enabling all participants to contribute their views and shape the discussion.
World Continence Week (WCW) is an annual initiative with the primary aim to raise awareness about incontinence related issues. WCW was initiated by the International Continence Society (ICS) in 2008 with the first ever World Continence Day. This became World Continence Week (WCW) in June 2009 with activities being developed worldwide.
Duchenne Patient Academy works in partnership with leading DMD patient organisations to set a strong patient advocacy base for patient organisations and the Duchenne and Becker community at large. We do this through connecting leading experts in their fields in a week-long intensive training and capacity building programme. By connecting the DMD/BMD world, we aim to contribute a unified and strong voice to coordinate the global advocacy strategy of the community.
During the second weekend of October, the EPF Youth Group held its Fall Meeting. Despite the virtual setting, it was still fun and enjoyable. More than anything this meeting gave us the opportunity to socialize as a group, and to talk through some of the challenges that that we have been facing over the past year. Most importantly, it gave us the chance to set up our goals for the next few months.
On the occasion of Liver Cancer Awareness Month, the European Liver Patients’ Association joined forces with Digestive Cancers Europe (DiCE) organizing, in the framework of DiCE Masterclass series, the webinar ‘Deep Dive into Liver Cancer’.
October is Liver Cancer Awareness Month (LCAM). Like every year, The European Liver Patients’ Association (ELPA) devotes the whole month to share the awareness, information, and important data regarding hepatocellular carcinoma (HCC) with its followers.
EPF has recently begun working on the CEMPaC project which promotes patient empowerment by offering information and training for both citizens and health professionals. We recently sat down with David Somekh, member of the CEMPaC board to give more information about the project and how EPF members can get involved.
Digestive Cancers Europe (DiCE) and the European Liver Patients Association (ELPA) – both EPF’s members - signed a Memorandum of Understanding. The agreement represents a formidable and active patient advocacy partnership that allows the two organisations to join their efforts behind bettering the outcomes and quality of life of patients across Europe.
The COVID-19 crisis has highlighted, once again, that patients should be involved in shaping health policy at national and European levels, and why their unique knowledge and expertise, collectively and individually, are vital. We believe that the EU4Health programme represents a unique opportunity to act on this, whilst enhancing European coordination to protect our health. EPF is concerned, however, that the direction Council discussions are taking currently may jeopardise this important progress. EPF sent a letter on 9 October to the Permanent representations while the voting recommendations were shared on 12 October to the Members of the European Parliament in view of the upcoming ENVI Committee vote on the EU4Health report, taking place on 12 and 13 October.
This year’s World Mental Health Day comes at a time when our daily lives have changed considerably as a result of the COVID-19 pandemic. For people with lived experience of mental ill-health, this time is an opportunity to reflect on some key points and barriers in the functioning of our mental health systems, such as recovery, human dignity, individual growth and stigma.
EPF invites you to take part in a survey to gather more information on the lived experience and impact of the COVID 19 pandemic on patients with chronic conditions, their communities and on patients’ organisations.
Following the European Health Parliament’s (EHP) Virtual Plenary on 9 September, EPF had the chance to speak with Fanni-Laura Mäntylä, the Chair of the Mental Health and Healthy Workforce Committee. We discussed her patient advocate experience as well as her committee’s resulting recommendations and their intended impact in the near future.
I think that the majority of the world would agree that 2020 has not been the year and the beginning of a new decade for which we had hoped. For all patients, from different patient communities the lockdown and social distancing has taken higher
The PARADIGM project, co-led by EPF, aims to make patient engagement easier for all is coming to an end. During the last session at the Patient Engagement Open Forum, co-organised with PFMD and EUPATI, the consortium presented two main outputs
The European Patients' Forum is pleased to release our recent response to the European Commission's consultation on the EU Pharmaceutical Strategy.
We believe that embedding meaningful patient involvement in everything that affects the patients'
The European Patients’ Forum welcomes the ambitious and timely European Programme of Work of the World Health Organisation (WHO). Its determination to address health inequalities and to leave no one behind aligns well with the UN SDG3 on health.
Amidst the ongoing COVID-19 crisis, attention has been turned towards enhanced European collaboration to ensure our health systems emerge from it stronger, more prepared and more people-centred. EPF believes this is a move in the right direction
As the dust is yet to settle on the COVID19 pandemic, the need to strengthen healthcare access and disease-prevention, whilst reducing health inequalities and bringing innovation to health systems across Europe persists,
Each year, the Regulatory Affairs Professionals Society (RAPS) selects outstanding recipients who have went above and beyond their regulatory professional expertise and commitments to provide for the greater good of regulatory affairs. This year, the European Patients’ Forum (EPF) received the Patient-Centered Health Award.
An effective vaccine will be the key to bringing the COVID-19 pandemic under control. Understandably, vaccine developers are under pressure to bring products to the market as quickly as possible, and authorities to approve them. While EPF appreciates the efforts made by industry and regulators to speed up the process, we stress that patient safety must be the highest priority. Regulatory ‘shortcuts’ must not lead to lowering the standards of safety or efficacy that should remain under the strict control of EMA.
EPF and several other health organisations expressed their concern and disappointment with the EU Council’s recent decision to cut the recently allocated EUR 9.4 billion for the ‘EU4Health’ programme down to 1.
18 pan-European healthcare stakeholders launched the statement “COVID-19 and Brexit – Protecting patients across Europe from pandemics” which highlights the importance of addressing health issues as part of the agreement on the future relationship between the EU and the UK.
All patients in the EU have a right to access high-quality, patient-centred care in a timely manner. However, there are concerns in Europe and globally that the cost of some new medicines is undermining health systems’ capacity to provide sustainable and equitable access for all.
From 16 April – 14 May, EHDEN (European Health Data & Evidence Network) announced a rolling COVID-19 Rapid Collaboration Call with the goal to help health professionals and the public to know more about how to characterise COVID-19 patients,
The EPF Youth Group’s Spring Meeting took place on 13-14 June. Though unable to meet up in person as planned, the Group’s excitement at the prospect of welcoming new members, electing a new Vice President and planning for future endeavours was in no way compromised.
EU PEARL has launched a call for testimonials to collect feedback on patient’s experience participating in clinical trials. If you have participated in a clinical trial and have feedback to share, you can write to us in 3-5 sentences about your
On 25 April 2020, EPF Members gathered online for the 17th Annual General Meeting. This was the first ever virtual AGM for EPF, adapting to the current COVID-19 circumstances while upholding fundamental governance standards for EPF and its members.
On 21-22 November 2019, EPF joined 36 other partners for the kick off meeting of the EU Patient-Centric Clinical Trial Platform (EU-PEARL) project. The project partners met to discuss the objectives of the project,
This year World Health Day 2020 is centred on the theme of nurses and midwives. It shines a spotlight on their work, and it serves as a reminder of the critical role they play in healthcare. It is important to remember that nurses and other health