Hrvatski savez za rijetke bolesti

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No longer registered as of 26 Jun 2021 - Registration as it was on 10 Jul 2020
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Lobbying Costs


Financial year: Jan 2019 - Dec 2019

Lobbyists (Full time equivalent)

1 Fte (2)

Lobbyists with EP accreditation


High-level Commission meetings


Lobbying Costs over the years

  • Info

    Hrvatski savez za rijetke bolesti   (HSRB)

    EU Transparency Register

    889424538741-61 First registered on 25 Jun 2020

    Goals / Remit

    Rare Diseases Croatia is umbrela association for rare diseases in Croatia. The main purpose is to achieve, harmonise and protect rare diseases patients individual and common rights and interests. Today it gathers:
    Over 1000 individuals with rare diseases
    30 nonprofit organizations acting for the benefit of patients
    More than 400 different rare diagnoses
    Some of the most important activities:
    Providing psychosocial help and support to people with rare diseases
    Marking the international Rare Disease Day
    Organizing national conferences about rare diseases
    Managing the Croatian Help Line for Rare Diseases
    Managing the Croatian Orphanet web – Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. provides psychosocial support to patients with rare diseases and family members
    Developing new models of support for people with rare diseases
    Developing cooperation with institutions and organisations at the local and national level (...)

    Main EU files targeted

    Rare diseases

    European Disability Strategy 2010-2020

    Employment, Social Affairs & Inclusion catId=1135&langId=en

    A European Strategy for Data


    Head Office
    Ivanicgradska 38
    Zagreb 10000
  • 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


    III - Non-governmental organisations


    Non-governmental organisations, platforms and networks and similar

  • Networking


    Member organisations

    None declared

  • Financial Data

    Closed financial year

    Jan 2019 - Dec 2019

    Lobbying costs for closed financial year


    Other financial info

    None declared

  • EU Structures

    Groups (European Commission)


    Groups (European Parliament)


    Communication activities

    Energy efficiency in buildings – consultation on ‘renovation wave’ initiative

    Other activities

    None declared

  • Meetings


    None declared

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