Hrvatski savez za rijetke bolesti

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 (...)

Rare diseases
https://ec.europa.eu/health/non_communicable_diseases/rare_diseases_hr

European Disability Strategy 2010-2020 https://ec.europa.eu/eip/ageing/standards/general/general-documents/european-disability-strategy-2010-2020_en

Employment, Social Affairs & Inclusion
https://ec.europa.eu/social/main.jsp catId=1135&langId=en

A European Strategy for Data
https://ec.europa.eu/digital-single-market/en/policies/building-european-data-economy

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No lobbyists with EP accreditations

None declared

Data not provided by Register Secretariat due to GDPR

Data not provided by Register Secretariat due to GDPR

III - Non-governmental organisations

Non-governmental organisations, platforms and networks and similar