EGAN's membership includes several national (United Kingdom and the Netherlands) and regional (central and eastern Europe) genetic alliances, and about 15 disease-specific European patient organisations for genetic diseases. The Fabry International Network (FIN) is a non-governmental, not-for-profit patient-driven alliance of patient organisations and individuals active in the field of Fabry disease, dedicated to improving the quality of life of all people living with Fabry disease, worldwide. BEUC is the umbrella group for 45 independent consumer organisations from 31 countries. The publication of medical, social and legal information or recent scientific developments with regard to Multiple Endocrine Neoplasia (MEN); The organisation and implementation of scientific events related to MEN; To provide a robust platform for capacity building: to engage, educate and inspire representatives and advocates of people affected by MS to be a strong and effective voice, To strive for better access to treatments, therapies, and integrated care for people with MS across Europe, To promote evidence-based good practice, and more effective health and social care for people with MS, through digitalisation and health data, To fight for equity and social inclusion and social protection of people affected by MS, To support more and better investment of people and resources in MS research. We do this by elevating the patients voice, by empowering member organisations to advocate and campaign at a national level, and by harnessing that network to advance research and influence stakeholders at a European level. Write to us! SMA Europe represents 26SMA patientorganisations from 24countries across Europe. As of November 2022, ECL represents, supports and unites 31 cancer leagues across 26 countries in the WHO European region, of which 21 are EU Member States. We represent Europeans affected by all types of cancers, from the rarest to the most common. The European Liver Patient Association (ELPA) was founded in 2005. Poland: FUNDACJA KUPUJ ODPOWIEDZIALNIE News . We represent 46 independent national consumer organisations in Brussels and defend the interests of European consumers. As the first point of consumer contact for cross-border transactions in Europe, we can quickly identify the challenges EU citizens face in other countries within the Internal Market and address these with EU policymakers. All our associated national organisations are members of Consumers International, the membership organization for consumer groups around the world. FIN represents the worldwide Fabry community, including more than 27 Fabry-, lysosomal- or rare-disease organisations, including 18 EU Member States. It has been working in an official relationship with the World Health Organization (WHO) since 1996. ELPA represents patients with hepatitis and liver disease and consists of 31 national liver patient associations from 25 countries from all over Europe and the Mediterranian basin (status on October 2019). Were we able to help you with this information? Member organisations are consumers representative, in accordance with their national rules or practice. 17. It has 29 member countries (Europe) and three associate (non-Europe). That people with Parkinson's and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life. EPHA's member organisations work individually and collectively to promote and protect the health interests of people living in Europe. The European Consumer Organisation (BEUC) is the umbrella group in Brussels for 46 independent consumer organisations. Do you have a question or complaint about your consumer rights? 2K followers 500+ connections. ELFs latest strategy has 6 key areas of focus: Be patient led; Improve knowledge and understanding; Engage effectively; Have a strong voice; Ensure good governance; and Increase resource and reach. Report this profile Activity Hey Social Media Managers! It covers all of the more than 8000 Fabry-disease patients worldwide. Email: communications [AT]beuc.eu. The protection of consumers economic interests in the market opens indeed a whole new perspective for consumerism as engine for development. Founded in 1992, the European AIDS Treatment Group (EATG) is a patient-led NGO that advocates for the rights and interests of people living with or affected by HIV/ AIDS and related co-infections within the WHO Europe region. The ECC-Nets legal experts assist consumers in solving their cross-border problems free of charge by providing legal expertise in consumer rights and assisting with disputes through out-of-court methods. European Association for Coordinating Consumer Representation in Standardisation (ANEC), Confederation of Family Organisations in the EU (COFACE), European Community of Consumer Cooperatives (Euro Coop).
The European Multiple Sclerosis Platform (EMSP) was founded in 1989. 19. Work for better treatment and care for HD patients and families all over Europe. improving their health-related quality of life and holistic well-being throughout their life cycle; increasing the usage of HIV, viral hepatitis, TB, and STI combination prevention and testing strategies in affected communities; ensuring that ongoing research continues to yield best quality new HIV, viral hepatitis, TB and STI diagnostics, medicines, medical devices and care, as well as progress towards cure. Both our network and our individual offices contribute expertise and proposals to consumer law policies created by EU institutions and national regulators. The Patients Network for Medical Research and Health (EGAN) is the European network of national and regional alliances and European disease-specific organisations for patients with genetic disorders and other serious medical needs. IBE provides an international and global platform for the representation of epilepsy in relation to national and international organisations and governments. Italy: FEDERCONSUMATORI & FEDERCONSUMATORI PIEMONTE We currently represent 75 patient organisations representing 19 countries and an estimated 150 million patients across Europe.
The European Consumer Organisation BEUC - The European Consumer Organisation About: European Consumer Organisation (BEUC) UPPMD is a worldwide organisation dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to informing parents around the globe. EHN is a Brussels-based alliance of national heart foundations and associations dedicated to preventing cardiovascular diseases (CVD), supporting patients, representing patient interests and funding research throughout Europe. Our world is in a total transformation and often we dont consider that the elements of nature are not infinite. GAMIAN-Europe, a patient-driven pan-European organisation, represents the interests of people affected by mental health illness and advocates for their rights. as co-founder of World Prematurity Day or leader of various campaigns. We are also part of the Transatlantic Consumer Dialogue (TACD), a forum of US and EU consumer organisations which makes joint policy recommendations to the US Government and the European Union. European Consumer Organisation. IDF Europe is a mixture of patient organisations and organisations of healthcare professionals.
TikTok breaching users' rights - European Consumer Organisation 1. million people, Euroconsumers is the worlds leading consumer cluster in innovative Our daily work involves making sure the EU takes policy decisions that improve the lives of consumers. We are driven to contribute to change or create EU and national laws to improve cancer patients outcomes by empowering them to become the co-creators of their own health. From our 29 offices across the EU, our 150 legal experts provide advice and assistance in 24 different languages. If you want to ask a question or request information from EMA, please Send a question to the European Medicines Agency. UPPMD is represented worldwide by its members (patient organisations) in 16 European and 6 non-European countries. This covers a range of topics including competition, consumer rights, digital rights, energy, redress and enforcement, financial services, food, health, safety, sustainability and trade policy. The European Consumer Organisation (BEUC) is the umbrella group in Brussels for 46 independent consumer organisations. Today, ECU is composed by 23 National Consumer Associations coming from 16 EU Member States plus 1 extra Member EU as ratified in the Paris ECU General Assembly 2018. Company profile page for European Consumer Organisation/The including stock price, company news, press releases, executives, board members, and contact information But a new poll revealed little support for heat . ECL provides a voice and a forum for cancer leagues to collaborate with their international peers, primarily in the areas of primary and secondary cancer prevention, access to medicines, and patient support. To provide a voice for pain at European level through clinicians, scientists, policymakers and politicians. PAE's vision is to create a Europe in which chronic-pain patients can have access, without any boundaries, to the best possible treatment for them. Our European member organisations are part of the umbrella network of BEUC, the European Consumer Organisation. Our main role is to represent them to the EU institutions and defend the interests of European consumers. The European Consumer Organisation (BEUC) is calling for EU and national authorities to launch an investigation into ChatGPT and similar chatbots, following the filing of a complaint by US-based civil society group CAIDP [1] with the US Federal Trade Commission against ChatGPT-4 today. Only regulation with teeth can stop the greenwashing of financial products, Hormone-disrupting chemicals found in 60% of 121 childrens products, https://www.youtube.com/user/BEUCandTRACEvideo, https://www.linkedin.com/company/beuc-the-european-consumer-organisation. umbrella organisations encompassing a number of smaller or national organisations; organisations with a focus on a specific area.
Staff | BEUC Three of our associated organisations Test Achats/Test Aankoop, Deco and Altroconsumo are also members of the BEUC Executive. The European Consumer Centres Network (ECC-Net) is a pan-European organisation that puts consumers at the heart of EU consumer policy. In the health area its main objectives are: The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) was founded in 1991. Improve access to early diagnosis and patient-centred care through advocacy and awareness, Build capacity and support IPOPIs national member organisations to improve living conditions for people living with PID, Educate, promote knowledge and data sharing to increase understanding of PID, improve clinical care and advance research, Strengthen multi-stakeholder cooperation to optimize all programmes and activities, Be the global source for lymphoma facts and statistics, Improve awareness and understanding of lymphomas, Build capacity for new and existing lymphoma groups. Our vision is an inclusive society for all ages, based on solidarity and cooperation between generations. They are recognized and guaranteed the rights and individual and collective interests of consumers and users, the protection at the national and local level are promoted, , are favored initiatives designed to pursue these objectives, including through the regulation of relations between the associations of consumers and users and public administrations. New evidence shows consumers' diets heavily influenced by food sector, Consumer groups launch EU-wide complaint against 17 airlines for greenwashing, Hype or Harm? Their goal is to represent European consumers, make them aware of their rights, and to influence the development of EU policies thatpromoteand defendtheirinterests. BEUC is the umbrella group for 46 independent consumer organisations from 32 countries. 11.05.2023. By 2004, there were 13 ECCs, while the EEJ-Net covered 15 countries. At the European level we are proud to be a founding member of BEUC umbrella network with whom we join forces to ensure that policies adopted by the EU benefit consumers. Its priorities are defined by BEUC members who meet twice a year at the general assembly and at several experts meetings. IAPO's mission is to help build patient-centred healthcare worldwide by: The International Bureau for Epilepsy (IBE), established in 1961, is an international organisation for epilepsy organisations whose primary purpose is to improve the quality of life of people with epilepsy and those who care for them. for haemophilia, von Willebrand Disease and other rare bleeding disorders from 27 EU Member States and most Council of Europe countries. strengthening our membership capacity, including enabling and empowering patient engagement in policy and research. Gathering five national consumer organisations and giving voice to a total of more than 1,5 million people in Italy (Altroconsumo), Belgium (Test Aankoop), Spain (OCU), Portugal (DecoProteste) and Brazil (Proteste), Euroconsumers is the world's leading consumer cluster in innovative information, personalised services and defence of consumer rights. IPWSOs objectives are to provide responsive and effective supports, promote the development of evidence-based interventions, and grow and strengthen the global PWS community. Neither the European Union nor the granting authority can be held responsible for them. Slovakia: ASSOCIATION OF CONSUMER ORGANIZATIONS IN SLOVAKIA BEUC strongly advocates putting the consumer interest at the core of systemic changes in how we produce and consume, while ensuring vulnerable groups (children, the elderly and low-income groups) are taken into account. In 2012, BEUC celebrated its 50th anniversary. EC Invest will work with those stakeholders that want to contribute to a more sustainable financial market enhancing the financial literacy of all investment products available to businesses and consumers in Europe, Latin America and the rest of the World. BEUC - The European Consumer Organisation (BE) Maryant is a lawyer and Digital Team Leader at BEUC - The European Consumer Organisation. Constructive dialogue with political decision-makers and opinion-leaders. Alzheimer Europe (AE) was founded in 1990 and represents the interests of people with dementia and their carers in collaboration with its national member organisations. If you reside in the EU, the ECC Network provides free, confidential expert advice on your consumer rights if: The European Consumer Centre Networks primary role is to increase consumer confidence with cross-border transactions by providing free information and advice on consumer rights, as well as assistance with complaints. IPOPI currently has 69 national member organisations representing patients with PIDs, including 21 EU member states. Euroconsumers member investigations have found a steady stream of fake reviews on e-commerce sites.
Beuc - the european consumer organisation ELF also communicates the latest lung science to those outside the field of lung health. For more information on the eligibility criteria and engaging with EMA representing a patients' or consumers' organisation, see Getting involved. It was founded in Vienna, Austria, in 2003. On June 22, 24 consumer associations across 19 countries led by BEUC, the European Consumer Organisation, filed a complaint to the European Commission and the network of consumer protection authorities (CPC) against 17 airline companies for greenwashing. 13.
Who we are | BEUC IAPO's vision is that patients throughout the world are at the centre of healthcare.
European Consumer Organisation/The - Company Profile and News Investigation by EU authorities needed into ChatGPT technology - BEUC It organises Together we are stronger meetings aiming at advocacy and awareness-building for people with diabetes and all those who care about them. BEUC represents its member organisations, national consumer groups, to the EU institutions. AGE Platform Europe (AGE) voices and promotes the interests of the 198 million citizens aged 50+ in the European Union and to raise awareness of the issues that concern them most. We represent more than 30.000 people affected with HD in Europe. This covers a range of topics including competition, consumer rights, digital rights, energy, enforcement, financial services, food, health, safety, sustainability and trade policy.
to address the low profile of liver disease as compared to other areas of medicine; to work with professional bodies such as the. We help consumers from the EU, Norway and Iceland access the internal market safely by providing information and helping them get redress. to promote health throughout the lifespan of women, men and children; to ensure quality and equity in health policy, research, treatment and care; to draw policymakers' attention to the obstacles that minority and socio-economically disadvantaged groups face in obtaining a desirable health status; to influence the social construct that enables and empowers individuals to play an active part in their own health; to campaign for gender-specific biomedical and socio-economic research to ensure access to quality treatment and care for women. We support the interests of European consumers every day. In particular, this purpose will be achieved through. Continuando a utilizzare questo sito senza modificare le impostazioni dei cookie o cliccando su "Accetta" permetti il loro utilizzo. For the United Kingdom, as of 1 January 2021, European Union law applies only to the territory of Northern Ireland (NI) to the extent foreseen in the Protocol on Ireland / NI. It also supports the participation of its member organizations in relevant EU, United Nations and Council of Europe work and projects, networking and related actions at national level. TheEuropean Consumer Centre Networkoffers consumers across the European Union advice on their consumer rights and legal protections when shopping and travelling in another European Union member state and some European Economic Area countries. The organisation is funded by an EU grant, its member fees and other specific projects (see "External links"). Co-funded by the European Union. TIF's vision is equal access to appropriate healthcare and good quality of life for every patient with thalassaemia across the world.
Brussels, Belgium beuc.eu Joined January 2011. IPOPI's vision is to improve awareness, access to early diagnosis and access to care for patients living with primary immunodeficiencies worldwide. We lead patient advocacy in Europe providing a cross-disease perspective from a wide patient community to the policy-making process on issues which have a direct impact on patients lives. We pursue advocacy from the patient level to the highest levels of government through our 'official relations' status with the World Health Organization and respected relationship with the European Medicines Agency. It covers more than 4,000 distinct rare diseases. By Foo Yun Chee. Senior Advisor - Competition at BEUC - The European Consumer Organisation Brussels Metropolitan Area.
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