European AIDS Treatment Group

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Registration as it was on 01 Mar 2024
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Overview

Lobbying Costs

25,000€ - 49,999€

Financial year: Jan 2022 - Dec 2022

Lobbyists (Full time equivalent)

1.5 Fte (6)

Lobbyists with EP accreditation

2

High-level Commission meetings

2

Lobbying Costs over the years

  • Info

    European AIDS Treatment Group   (EATG)

    EU Transparency Register

    49959188061-85 First registered on 13 Feb 2012

    Goals / Remit

    For 2020-2025, EATG’s mission is:
    Equitable, speedy and sustainable access to:
    • effective treatments and holistic care for all people living with HIV
    • effective prevention and diagnosis for all communities affected by HIV
    EATG has 3 Programme Areas:
    -Quality of Life to engage, inform and empower all people living with and affected by HIV in improving their health-related quality of life.
    - Combination Prevention to engage, inform and empower all people living with and affected by HIV in increasing the usage of HIV, viral hepatitis, TB and STI combination prevention and diagnostic strategies in affected communities.
    -Partners in Science - To engage, inform and empower all people living with and affected by HIV in 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.

    Main EU files targeted

    - EU Pharmaceutical Strategy - Timely patient access to affordable medicines : consultation on the roadmap and strategy: EATG submission and via European Public Health Alliance as members.
    - EU4Health Programme: input into WP 2021 and 2022 via EC webinar and contribution to HIV Outcomes, CSF on HIV,TB and Hep and ACHIEVE Coalition
    - Establishment of the European Health Data Space: contribution the debate by the EmERGE closing meeting (EC funded project), submission to EC consultation, speaker at European Public Health Alliance meeting
    - Cancer mission, EU Beating Cancer plan and EU4health WP 2022: input regarding virus caused cancers as EATG and as part of the ACHIEVE coalition for the elimination of viral hepatitis
    - EU drug policy strategy and action plan 2021-2025 and action plan: contribution via the EU Civil Society Forum on Drugs
    - Proposal for a regulation of the European Parliament and of the Council on the European Union Drugs Agency: contribution via the EU Civil Society Forum on Drugs
    - ECDC HIV Dublin monitoring: input to advisory group and EATG/AAE/ECDC survey on stigma
    - Regulation (EU) 2017/745 of the European Parliament and of the Council of 5 April 2017 on medical devices: monitor implementation and request for clarifications regarding rapid diagnostic test and use by lay provider

    Previous input/submissions:
    - COMMISSION STAFF WORKING DOCUMENT SWD(2018) 387 final on Combatting HIV/AIDS, viral hepatitis and tuberculosis in the European Union and neighbouring countries - State of play, policy instruments and good practices
    - Submission to EMA Consultation on the Role of big data for evaluation and supervision of medicines in the EU
    - submission to EU Drugs Strategy 2013-20 – evaluation consultation(December 2019-Feb 2020);
    - submission to EU Drugs Agenda and Action Plan consultation in June-July 2020
    - ECDC: Public health guidance on HIV, hepatitis B and C testing in the EU/EEA: input as expert, 2018

    Address

    Head Office
    Achenbachstr.5
    Düsseldorf 40237
    GERMANY
    EU Office
    Avenue des Arts 56-4c
    Brussels 1000
    BELGIUM

    Website

  • People

    Total lobbyists declared

    6

    Employment timeLobbyists
    25%6

    Lobbyists (Full time equivalent)

    1.5

    Lobbyists with EP accreditation

    All Lobbyists with EP accreditation over time

    2 accreditations were / are live (in bold) for the selected state of 15 Apr 2024

    Name Start date End Date
    Chiara LONGHI 14 Mar 2024 13 Mar 2025
    Ann Isabelle von Lingen 23 Mar 2024 02 Oct 2024
    Ms Ann Isabelle von Lingen 23 Mar 2024 02 Apr 2024
    Ms Chiara LONGHI 14 Mar 2024 02 Apr 2024
    Mr Pieter VANHOLDER 15 May 2020 01 Jun 2021
    Ms Ann Isabelle von Lingen 13 May 2020 13 May 2021
    Mr Pierre VARASI 20 Feb 2020 20 Feb 2021
    Ms Marina COGNEE 20 Feb 2020 20 Feb 2021
    Mr Bojan CIGAN 20 Feb 2020 20 Feb 2021
    Giorgio BARBARESCHI 20 Feb 2020 20 Feb 2021
    Mr Pieter VANHOLDER 18 Apr 2019 01 May 2020
    Ms Ann Isabelle von Lingen 04 Apr 2019 04 Apr 2020
    Ms Fiona GREENHALGH 04 Apr 2019 12 Feb 2020
    Ms Ann Isabelle von Lingen 21 Feb 2017 17 Feb 2018

    Complementary Information

    We are a voluntary organisation with over 150 members from over 45 countries within and outside Europe.
    Our full-time Programme Manager works approx. 1/3 of her time on transparency register activities.

    Person in charge of EU relations

    Data not provided by Register Secretariat due to GDPR

    Person with legal responsibility

    Data not provided by Register Secretariat due to GDPR

  • Categories

    Category

    Non-governmental organisations, platforms and networks and similar

  • Networking

    Affiliation

    EU Civil Society Forum (CSF) on HIV , TB and Hepatitis
    EU Civil Society Forum on Drugs
    WHO Regional Coordination Committee on HIV, TB and Hep
    AIDS Action Europe;
    European Public Health Alliance (EPHA);
    European Forum for Good Clinical Practice (EFGCP)
    European Patient Forum (EPF)
    Platform for Cooperation with undocumented migrants (PICUM)
    ILGA – Europe
    PHILEA - Philanthropy Europe Association
    ESWA - European Sex Workers Rights Alliance

    Member organisations

    None declared

  • Financial Data

    Interests represented

    Promotes their own interests or the collective interests of their members

    Closed financial year

    Jan 2022 - Dec 2022

    Lobbying costs for closed financial year

    25,000€ - 49,999€

    Major contributions in closed year

    None declared

    Intermediaries for closed year

    None declared

    Intermediaries for current year

    None declared

    Closed year Costs

    25,000€ - 49,999€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)

    Commission expert group - Civil Society Forum on Drugs#E02681#https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=2681 #Member #C#Civil society

    Groups (European Parliament)

    LGTBI#EU Civil Society Forum on Drugs

    Communication activities

    EU Civil Society forum on HIV, TB and Hepatitis coordination with AAE, EHRA, Correlations, TBEC. EATG acts as secretariat together with AAE.
    EUHPP thematic network on HIV, TB and Hep coordination with the CSF.
    Pan-European Mental Health Coalition: To address these gaps in mental health services and support, many of which have been made worse by the COVID-19 pandemic, WHO/Europe has launched a new Pan-European Mental Health Coalition.
    The Glasgow Manifesto of the International Coalition of Older People with HIV (iCOPe HIV): It has been launched on Glasgow HIV conference in October 2022 and has been endorsed by more than 120 organisations. iCOPe HIV is an initiative of the four founding partners EATG (Europe), NATAP (USA), Realize (Canada) and UTOPIA_BXL (Belgium).
    EHVA: This project Project aims: To develop a Multidisciplinary Vaccine Platform (MVP) in the fields of prophylactic and therapeutic HIV vaccines.
    RBDCOV - RBD Dimer recombinant protein vaccine against SARSCoV2
    EU-PEARL – EU Patient-Centric Clinical Trial Platform
    EATRIS+ - Flagship in Personalised Medicines
    Project CORE – “Community Response to End Inequalities” (2023_2025) aims to reduce these inequalities by promoting, strengthening and integrating the community responses that have proven key in reaching those not yet connected to prevention and healthcare services, especially in MSs where these responses are still lacking.
    The Strategic Community HIV Prevention Empowerment – SCOPE - project aims to strengthen community engagement at local and regional levels to reduce the gap in access and use of HIV combination prevention interventions by populations that are most affected by HIV, but which remain inadequately served by the health system and which are underrepresented in policy and public debate.
    Project PROMise: The overall goal of the project is to establish a guidance document and recommendations for the consideration of HIV-specific Patient Reported Outcome Measures (PROMs) in HIV R&D in collaboration with key stakeholders from community organisations, academia, industry, regulators and Health Technology Assessment (HTA) bodies.
    Project BELONG: The overall goal of this advocacy project is to produce a position paper that advocates for the inclusion of people living with (as suggested by the FDA) HIV in clinical research to be mirrored by European countries and regulated by the EMA, not only for cancer trials, but also for other disease areas.
    From March 2020 to January 2021, EATG documented the impact of the disruption caused by the ShapeSARS-COV2 pandemic on people living with or most affected by HIV and solutions found to mitigate it, including at community level. EATG published 6 bulletins, organised mutual learning e-meetings on HIV self-testing, ensuring continuity in sexual health services, COVID-19 vaccines, adaptation of services at community level: https://linktr.ee/eatgcovid19
    The HIV and Mental Health project aimed to explore the existing knowledge about the interplay of mental health, well-being and HIV and translate it into practical recommendations for both community organisations and healthcare professionals in the European context.
    40 years of HIV/AIDS: Stigma & Discrimination and the impact on Mental Health: https://www.eatg.org/campaigns/wad-2021-40-years-of-hiv-aids-stigma-discrimination-and-the- impact-on-mental-health/
    30 years EATG: As part of its 30-year celebrations, EATG launched on World AIDS Day 2022 a publication, ‘Celebrating 30 years of HIV Activism: Stories from The Frontline’:
    EATG, together with ECDC and AAE coordinated and launched the first ever European-wide HIV stigma survey.
    HIV and eHealth: Opportunities and Challenges for People Living with and Affected by HIV:
    EATG endorses a series of letters and statements touching upon EU policies on health, access, funding, human rights etc.

    Other activities

    Achievements:
    EATG has been at the forefront of community involvement in treatment development in HIV and co-infections. Our models of community involvement are shared with patient organisations beyond the HIV and co-infections field. EATG has been leading on innovative techniques such as biomedical prevention and HIV cure research.
    EATG has been actively involved in setting up the EU Civil Society Forum on HIV, hepatitis and TB. Currently we are playing a leading role in the reform of the CSF.
    In 1997 EATG created the European Community Advisory Board (ECAB) to address key science and policy issues related to HIV and its main co-infections like hepatitis C or tuberculosis. Today and in the coming years, these ECABs will remain one of EATG’s core activities. This model of high-level scientific platform has been copied by other national and international community groups and networks (e.g. Portuguese CAB, EECA CAB, TB CAB, Positive Council Switzerland etc.)
    Via our ‘Sitges’ meetings, EATG has driven the community input in HCV cure development.
    EATG provides capacity building to different stakeholders, thus supporting better networking (especially in Central and Eastern Europe), increased capacity of people living with HIV and health care providers, but also – via follow up activities – direct involvement of these people in new scientific and policy activities.
    Population(s) served:
    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. It is a network of more than 150 members from 45 countries in Europe. Our members are PLHIV and representatives of different communities affected by HIV/AIDS and co-infections. EATG represents the diversity of more than 2.3 million people living with HIV in Europe as well as those affected by HIV/AIDS and co-infections.
    Our members are representatives of different communities affected by HIV/AIDS in Europe. Our members are expert patients and treatment advocates coming from the WHO European region continuously working together to end the epidemic by advancing research on HIV/AIDS, broadening access to treatment, training/mentoring new HIV/AIDS advocates and ensuring that the patient Community is a permanent and highly-recognised voice in the research arena.
    EATG has close links with groups and organisations within the area of sex work, drug use, MSM, migrants, prisoners etc. Our work is also in close collaboration with organisations that work on related topics such as vaccine development, prevention, liver disease, sexual health or human rights issues such as stigma and discrimination.
    Involvement of people living with HIV :
    EATG is a membership driven organisation. Our members are all members of the General Assembly (GA), the highest decision-making body of the EATG. A major part of our members are people living with HIV. The GA is called at least annually by the Board of Directors (BoD). The GA elects the members of the BoD and other bodies. Directors are elected for a period of two years.
    HIV positive members are also represented within each part of the structure (selected via democratic systems): Programme Chairs; BoD members, staff and other internal positions. EATG has 3 Programme Areas: Quality of Life, Combination Prevention and Partners in Science. Members become active within one or more of the Programmes, as part of designated Programme Committees or ad hoc task groups. EATG regularly organises consultations with its members and other groups. We actively support the GIPA principle.
    Members are the main drivers of our strategic development. With support from the office members, they draft our long-term strategy, set priorities etc. We have many HIV-positive members involved as representatives within different structures and positions such as steering committees, scientific committees, and advisory boards.

  • Meetings

    Meetings

    2 meetings found. Download meetings

    The list below only covers meetings held since November 2014 with commissioners, their cabinet members or directors-general at the European Commission; other lobby meetings with lower-level staff may have taken place, but the European Commission doesn't proactively publish information about these meetings. For more information about which commissioner is responsible for which portfolio, check out this link: https://commissioners.ec.europa.eu/index_en All information below comes from European Commission web pages.

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