Directors, secretaries and shareholders are not in CRO's open data. CRO sells officer information through CORE; it is not shown here rather than guessed.
Lobbying returns
Returns filed on the Register of Lobbying, newest first, with the policy area and intended results as the lobbyist published them.
Increased knowledge and understanding of unmet needs of people living with rare diseases.::PQs to Minister to seek commitment to deliver expanded newborn bloodspot screening program.::Expansion of newborn bloodspot screening panel to bring us inline (at minimum) with average…
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-09-20
Lobbying return by Rare Diseases Ireland
Health
Intended results
Inclusion of rare disease priorities in political party manifestos.::Inclusion of rare disease priorities in programme for government following next general election.
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Attendance at Rare Diseases Day Conference - Looking to the future for rare diseases - on February 29::Minister to address Rare Diseases Day Conference - Looking to the future for rare diseases
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Support to revisit policy, legislation and process to approve reimbursement of orphan medicines
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Policy proposals included in FF manifesto for upcoming EU elections
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Increased knowledge and understanding of unmet needs of people living with rare diseases.::PQs to Minister to seek commitment to deliver expanded newborn bloodspot screening program.::Expansion of newborn bloodspot screening panel to bring us inline (at minimum) with average…
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Secure recruitment of promised resources to enable implementation of published strategy at HSE
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Inclusion of policies and plans to address needs of rare disease community in Ireland in SF document 'Priorities for Change in Health and Social Care' and future election manifesto
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Revision of report to acknowledge unmet needs of rare disease community with respect to reimbursement of orphan medicines
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-05-21
Lobbying return by Rare Diseases Ireland
Health
Intended results
Support call for an EU Action Plan for Rare Diseases.::Support EU budget allocation to continue EU financial support for European Reference Networks (ERNS)::Support inclusion of a Joint Action on Newborn Screening in the upcoming EU4Health Work Programme.
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-01-19
Lobbying return by Rare Diseases Ireland
Health
Intended results
Recruitment of Genomic Resource Associates as promised in National Strategy for Genetics and Genomics published in 2022
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-01-19
Lobbying return by Rare Diseases Ireland
Health
Intended results
Recruitment of Genomics Resource Associates
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-01-19
Lobbying return by Rare Diseases Ireland
Health
Intended results
Debate at the Senate on rare disease polich
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-01-19
Lobbying return by Rare Diseases Ireland
Health
Intended results
Attendance by political representatives at in-person meeting
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.
Register of Lobbying2024-01-19
Lobbying return by Rare Diseases Ireland
Health
Intended results
Budget to resource and invest in European Reference Networks to enable delivery of expert care for people living with rare diseases.
Derived link · Matched by exact company name
Published name "Rare Diseases Ireland" equals CRO name "RARE DISEASES IRELAND" (CRO 140743) after normalising legal forms such as Ltd = Limited. No other CRO company has this name. Names can be shared, so compare the address and dates on the CRO record.