Rare Diseases Ireland

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Registration as it was on 09 Nov 2023
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Lobbying Costs


Financial year: Jan 2022 - Dec 2022

Lobbyists (Full time equivalent)

0.1 Fte (1)

Lobbyists with EP accreditation


High-level Commission meetings


Lobbying Costs over the years

  • Info

    Rare Diseases Ireland   (RDI)

    EU Transparency Register

    309832251878-17 First registered on 08 Nov 2023

    Goals / Remit

    Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland, working across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland. We advocate for, empower and engage organisations and advocates, as well as people living with rare diseases, their carers and their families, to mobilise together with a strong voice to shape policies and solutions driven by the needs of all people living with rare diseases. Our vision is a country where all people living with rare diseases live longer and better lives, reaching their full potential, and are included in a society that leaves no one behind. This means we want equity for people living with rare diseases in Ireland – equitable access to diagnosis, treatment, health and social care and opportunity.

    Main EU files targeted

    Pharmaceutical, medical devices and in vitro diagnostics regulations and legislation
    EU wide Action plan for rare diseases
    Clinical trials regulations
    European Health data space
    European Reference Networks
    Rare disease research


    Head Office
    Carmichael Centre, Brunswick St N
    Dublin 7 D07 XW62
    EU Office
    Carmichael Centre, Brunswick St N
    Dublin 7 D07 XW62


  • People

    Total lobbyists declared


    Employment timeLobbyists

    Lobbyists (Full time equivalent)


    Lobbyists with EP accreditation

    No lobbyists with EP accreditations

    Complementary Information

    None declared

    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


    Non-governmental organisations, platforms and networks and similar

  • Networking


    EURORDIS - Rare Diseases Europe

    Member organisations

    Rare Ireland FSN
    SMA Ireland
    HHT Ireland
    Cystic Fibrosis Ireland
    Fighting Blindness
    Cystinosis Ireland
    Debra Ireland
    22Q Ireland
    MSA Trust
    PKU Ireland
    Irish Lung Fibrosis Assoc
    Irish MPS Society
    Vasculitis Ireland Awareness
    PSP Asooc Ireland
    Dravet Syndrome Ireland
    Noonan Syndrome Ireland
    FARA Ireland

  • 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


    Major contributions in closed year

    None declared

    Intermediaries for closed year

    None declared

    Intermediaries for current year

    None declared

    Closed year Costs

    0€ - 10,000€

    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)


    Groups (European Parliament)


    Communication activities


    Other activities

    None declared

  • Meetings


    None declared

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