One of the ultimate aims of any indoor air pollution project should be to help local people find ways to use clean, sustainable fuels, but that is not yet feasible in most low resource settings. Past projects Find out about projects we have worked on in the past that have now ended. Looking back at how the whole process went, I couldnt agree more! Also, where there is no government safety net, FRESH AIR can count the benefits to individuals who have completed pulmonary rehabilitation in terms of their economic productivity and ability to participate fully in their village life: caring for grandchildren, going to school or taking a job. We also use third-party cookies that help us analyze and understand how you use this website. ' - Information about lung health in Ukrainian. Start the programme now: https://elearning.epaponline.eu @ACRPDC" Today is #ClinicalTrialsDay! Information and guidance for patients by patients on what matters most to people affected by lung conditions. ELF works with these projects to involved patients and ensure the outcomes andavailablefor patients and the public. European Lung Foundation's TR ID number in the Transparency Register is: 094039644810-79. ELF originally developed EPAP to engage with patients ready and able to get involved in the future of respiratory healthcare. 3TR is the largest IMI project yet, focussing on diseases autoimmune, inflammatory and allergic diseases including COPD and asthma. Home Get involved European Patient Ambassador Programme (EPAP). DRAGON will use artificial intelligence (AI) and machine learning to deliver a decision support system for precise coronavirus diagnosis using CT scanning. This work by European Lung Foundation is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Connect With a Patient Ambassador | Axonics It is a separate module, so that you can easily refer back to it if you need to. We also had ambassadors attending from the Netherlands and Portugal and Italy. By clicking Accept, you consent to the use of ALL the cookies. But opting out of some of these cookies may have an effect on your browsing experience. A project being implemented in the slums of Bangalore, India, has uncovered valuable feedback that the clean cooking stoves available are not necessarily suitable as they cook the food too fast and dont fit the large cooking pots used by the families. To receive updates on emerging results from FRESH AIR, sign up at www.theipcrg.org/freshair/newsletter. ELF carried out a survey of patient organisations that attended the first meeting of the ELF International Patient Advisory Committee and a number of issues of importance were highlighted. Some organisations came back with very specific ideas, around social media training and access to EU funding, and both of those requests were included, as was a session on the European Patient Ambassador Programme (EPAP), our e-learning tool for patients interested in patient involvement. Please note that all past learners, as well as new learners, will need to re-register for the new version. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. Connecting with organisations in other countries. In voicing their views, all of the focus groups participants exhibited a high degree of awareness of the external constraints that patient representatives can encounter in promoting and supporting their causes. We are excited to have now re-launched EPAP in all languages English, Dutch, French, Italian and Spanish with a new user-friendly platform, fresh design and updated sections. Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. Therefore, there are a number of projects run by a range of organisations that have introduced stoves that issue less smoke. To show how patient- and public-focussed initiatives and activities can be adapted and modified to be effective in local, national and international settings, and to provide specific examples of these from the European Lung Foundation. Our core content on Lung conditions and related factsheets has been translated to a number of other languages. By creating a programme and developing a community of Patient Ambassadors the ELF, CLAHRC and other organisations across Europe aim to get patients more involved in influencing healthcare and political decision-making. These new organisations were asked to specify areas that were of key importance to them, and responses included the following. Behandlung von Patienten aus dem Ausland | Info Praxisteam The https:// ensures that you are connecting to the . However, we worked with partners to ensure that the programme is suitable to people living with any chronic condition. European Patient Ambassador Programme Our free, online, self-learning programme that introduces patients and carers to some of the basic skills and knowledge you may need to represent yourself and others successfully. These cookies track visitors across websites and collect information to provide customized ads. Over the next 3years, FRESH AIR will explore why so many people in LMICs are dying from chronic lung diseases and what can be done to reduce the burden. GB 115 0027 74) and charity (no. The information helps interested patient and consumer representatives to understand: EMA has published a training overview describing the activities and materials available to patients and consumers taking part in EMA activities and events. ELF hopes that, in this way, it can support the work of individual patients locally, nationally and internationally. European Medicines AgencyDomenico Scarlattilaan61083 HS AmsterdamThe Netherlands, Brochure: Practical information for visiting EMA, Factsheet: Annual training day for patients and healthcare professionals. Patient ambassador activities Two patient advisory group (PAG) members, Amanda Roberts and Betty Frankemlle, presented a workshop on the benefits of EPAP at the ELF patient organisation networking day at the ERS International Congress in London in September. The aim of the project is to take well-published findings and interventions that have been researched and used in high-income countries, and test how to adapt them for use in countries with fewer resources in terms of trained staff, public knowledge, equipment, medicines and money, so that they are sustainable, impactful and equitable. The European Patient Ambassador Programme (EPAP) is a self-learning programme introducing patients and carers to the essential skills and knowledge needed to interact with healthcare professionals, policymakers, researchers and journalists. The European patient ambassador programme. Our core content on Lung conditions and related factsheets has been translated to a number of other languages by our volunteer team. European Lung Foundation's TR ID number in the Transparency Register is: 094039644810-79. Sign up to our free monthly newsletter to get the latest information and research news on lung conditions, plus views from experts and patients! The .gov means its official. SC005336, VAT Registration Number GB592950700, and is acknowledged by the UK authorities Freedom of information publication How many patient organisations are registered with the International Association of Patient Organisations? 2 people joined by Skype as well. An Overview of the programme, Users Guide, Technical Support and Glossary are also provided to optimise use and understanding of the programme. the contents by NLM or the National Institutes of Health. These issues include air quality, physical activity, smoking cessation and nutrition. Key points Although there are many patient organisations in Europe, this is not the case in all countries across the globe. Access to care is one of the main global issues highlighted by the European Lung Foundation International Patient Advisory Committee. HLfL seeks to reduce the number of people suffering from respiratory disease by raising awareness and knowledge of lung conditions and the ways to prevent lung damage. Victoria Atkins, financial secretary to the Treasury, was asked on Sophy Ridge on Sunday about the government's decision to paint over Mickey Mouse mural at a centre for migrants because it's too . This is, however, just a small portion of the total number of patient organisations that exist and do important work to provide support services and a platform for members to share their experiences. These cookies do not store any personal information. Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors. It explains all stages from initial research to patient access, including how EMA supports medicine development, assesses the benefits and risks and monitors the safety of medicines. We work hard to involve patients and the public in research, have your say. In the end, however, it turned out that people didnt want the chimneys because they believed ghosts would use them to enter the house; cooking under canopies outside the house turned out to be a much more viable solution. Politics latest: BBC star claims 'deeply concerning' - as minister copyright The University of Edinburgh. Abbreviation is mostly used in categories: Medical Research Medical Health. The project will achieve this through seven specific objectives, which are shown in table 2. In Vietnam, it was recommended that people build chimneys in their homes, something that had been done very successfully in China. The focus group consulted consisted of members of the LYB CLAHRC PPI (Leeds, York & BradfordCollaborations for Leadership in Applied Health Research and Care Patient and Public Involvement) network. European Lung Foundation on Twitter: "Today is #ClinicalTrialsDay